Does my child have autism?

Posted by Lylah M. Alphonse  April 3, 2009 06:05 AM

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Most people hear the word "autism" and automatically think of Rainman, the 1988 film starring Dustin Hoffman as an autistic savant with an affinity for numbers and a painful need for routine. But as any parent with a child on the Autistic Spectrum knows, most forms of autism look nothing like that.

So, what are Autism Spectrum Disorders? According to the National Institute of Mental Health (NIMH), "Autism Spectrum Disorders (ASD), also known as Pervasive Developmental Disorders (PDDs), cause severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others."

Our 10-year-old son was diagnosed with Asperger's Syndrome about five years ago. Asperger's is a very mild, or "High Functioning" form of autism, and it took time for family members to come to term with the diagnosis. "But he smiles and laughs and is affectionate! He can't be autistic!" one insisted. "That's can't be right," another declared. "He's just a quirky kid."

Some parents notice something different about their child from the beginning. Others see a change in a child who had been developing normally. Still others notice mild developmental issues that make them wonder if their child is just quirky, or if there's a larger problem looming. "Is it autism?" one mother asks herself. The answer: "Does it matter?"

Not in terms of how you love your child. But in terms of how to help your child navigate life? Absolutely.

April is National Autism Awareness month. Each week this month, I'll devote a post to issues that relate to life on the spectrum and the special parenting challenges that autism presents. This week, I'd like to introduce you to autism activist Mika Bradford.

Bradford became involved in the autism community nearly a decade ago, when her youngest son was diagnosed with autism as a toddler. A certified nutritionist, sales rep for nutritional supplement maker Kirkman, and a content specialist with AutismSpot, she has held a variety of positions with North Texas's Families for Effective Autism Treatment and is the founder of Natural Foods and Nutrition Consulting, Inc.

"My experience early on in my journey through autism was devastating and downright humiliating," Bradford says. "I am not alone when I say that many medical professionals belittled me and the questions I asked on behalf of my son. In the beginning, I had resentment but, over the years, I have come to realize that in many ways the physicians are just as much victims of the system as we have been."

For readers who don't have children on the spectrum, could you please share a couple of facts that surprise people when it comes to autism?

I think people are most surprised to learn that children with autism can get better, so much so that some children are considered to be recovered, losing their diagnosis. While this is not the outcome for every family, what we do know is that the quality of life for each child with autism can be improved.

Your readers may also be surprised to learn that many everyday things like what the children eat and drink can impact their moods and behaviors greatly. Research from major teaching universities are confirming what parents and a handful of professionals have known for over a decade -- that this condition is not only about the brain, but is affected by the other systems of the body.

Many people think that all children with autism are gifted, having special abilities. Only a handful of individuals with autism have "special skills." Most individuals with autism have difficulties in communicating, which can lead to inappropriate behaviors. The general public may see how parents handle these situations and not understand the reasoning of what is being done. Many parents, including myself, have spent thousands of hours and dollars learning how to parent using a positive approach, shaping the responses of the child (which ultimately hinges on our actions and behaviors as parents and caregivers). That may sound like common sense, but it is amazing how many parents of neuro-typical children never look at how their actions are impacting the responses of the child.

There are so many disorders that fall on the Autistic Spectrum -- Asperger's, ADD, SID, PDD-NOS, just to name a few. What are some of the "early warning signs" that a parent should watch out for?

Some of them are listed in Unraveling the Mystery of Autism and Pervasive Development Disorder: A Mother's Story of Research and Recovery by Karyn Seroussi. If a parent is concerned about their answers to some of these questions, then they need to speak to their physician about an autism screening.

Does your 18-month-old child's language development seem slow?
Has he lost words that he had once mastered?
Is he unable to follow simple commands such as "Bring me your shoes?"
When you speak to him, does he look away rather than meet your gaze?
Does he answer to his name?
Do you or others suspect hearing loss?
Does he have an unusually long attention span?
Does he often seem to be in his own world?

Autism is a developmental disability that impairs social and language development. It occurs in families from every class, culture, and ethnic background. It is not a mental illness, and it is not caused by trauma -- it is neurobiological and its symptoms can be greatly reduced by early diagnosis and treatment.

How has the autism community -- resources, research, treatment options -- changed in the 10 years since you first became involved with it?

Well I guess you could say it is completely different. When I started in the world of autism, very few people had even heard of dietary or nutritional support for autism. Families were told to just go home and love their children the way they were and instructed to look for long-term care and placement for the future. In just 10 years, the amount or resources has more than doubled. We now know that environment does affect autism and that this condition is not static as once believed. Researchers from prestigious universities like Harvard are confirming that this population has gastrointestinal and immune-mediated conditions that directly impact the behaviors and coping skills of these children. Treatments that are now available range from vitamin therapy to Applied Behavior Analysis to Hyperbaric Oxygen Therapy.

According to US Department of Education data, the number of autism diagnoses in children in the US has risen 644 percent from 1992-1993 to 2000-2001. Are doctors simply more aware of autism, and so are able to better diagnose it? Or are things previously dismissed as "quirks" now considered symptoms?

The diagnostic criteria have not changed that drastically in the past 10 to 15 years to account for the monumental increase in Autism Spectrum Disorders. If this was a condition that has risen due to better diagnoses, then where are all the adults with autism that should be accounted for? If the increase were due to children being reclassified, we would see the autism diagnosis increase and other disabilities decrease -- this has not been the case. The children who are now being diagnosed would never have "passed" as just being quirky. These children clearly have significant communication and social deficits that are debilitating.

What would you tell a parent whose child has been newly diagnosed with PDD-NOS?

I would encourage parents to leave no stone unturned when looking at what is the right therapy and intervention for their child. I would encourage them to give everything they have when trying to meet the educational and behavioral needs for their child. We have a saying in the world of autism, "You either pay now or pay later." This means that you ultimately have to find an effective way to deal with the challenges of autism. By providing the resources and support the child needs early on, you may bypass secondary consequences that would have arisen from those needs going unmet.

Parents must also give themselves grace. You must pace yourself to prevent burn out and, regardless of your financial resources, know that you can positively impact your child's life. Autism is an expensive condition to treat and live with, but resourceful families have found ways to work the system regardless of what funds are or are not available. You can do autism on a budget, it just may require a bit more planning.

Last, no matter what levels of functioning your child may be at, know that there is HOPE!

Read my full interview with Mika Bradford at Write. Edit. Repeat.

Do you have a child with autism? Please share your story or ask questions in the comments.

Lylah M. Alphonse is a Globe staff member and mom and stepmom to five kids. She writes about juggling career and parenthood at The 36-Hour Day and blogs at Write. Edit. Repeat. E-mail her at lalphonse@globe.com.


Recent posts:

TV: Not so bad for toddlers after all?

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What do you wish someone had told you when you first became a parent?

This blog is not written or edited by Boston.com or the Boston Globe.
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46 comments so far...
  1. My GOD....I typed in the single word 'autism' into Google and this was the first link that appeared. Do you know how THRILLED I am to be taken to a site that discusses all aspects of ASD? From therapy to gastrointestinal conditions. THANK YOU for spelling it out. Research now shows, without a doubt, that for most children with ASD, diet and supplements can play a huge role, as well as ABA and other therapy. For my son, therapy was useless until we changed his diet and he was finally able to concentrate of his therapy. Thanks for this article. Truly.

    JS, thanks for commenting! I'm happy to have been able to help in any way! -- LMA

    Posted by JS April 3, 09 02:21 AM
  1. Regarding the statement in the article, "If this was a condition that has risen due to better diagnoses, then where are all the adults with autism that should be accounted for?" There ARE more adults being diagnosed on the spectrum, and I am one - a 50-year-old woman diagnosed a year ago with PDD-NOS. I also know several other adults in my area who are recently diagnosed. Some are nearing retirement, while others are young people who learned of their diagnosis just as they enter college - What a difficult time to learn why one is "different"! Don't deny the truth or hide their diagnosis from your children. Help them seek out help and support as soon as you can.

    Posted by lea April 3, 09 02:47 AM
  1. why do people keep insisting that Asperger's is a 'very mild' form of autism - it is not! It is Autism in PURE FORM without speech delay!!! I have Asperger's & I strugle every day. I'm not 'mildly affected' by Autism - I'm autistic through & through. But do I suffer from autism? no. I suffer from people's ignorance, from being constantly misunderstood & rejected becuase I'm 'different', because my priorities in life are different (I want to change the world for the better, I'm obsessd with justice & creativity - I'm NOT interested in socialising & chatting shallow rubbish - I like deep conversations about deep stuff & I like to work hard without interuptions!))

    Thanks for your comment, Rozagy. I think people think of Asperger's as mild in part because the stereotype of people with autism is such a severe one. Our oldest son has Asperger's so the experience you describe is so familiar... thank you so much for sharing it. -- LMA

    Posted by Rozagy April 3, 09 05:36 AM
  1. Thank you for the article. Getting in and working as hard as you can is very good advice for an ASD child. Its not always pretty considering the meltdowns you may encounter but to move forward it has to be done. The resistance and funny looks you may get from others should be turned into even more resovle that is is worth it to fight for that child. Here is a short story from one of my early experiences while waiting for a bus that had missed its timing and my daughter knew exactly when it was to be there. She began to go into that anxious state just as another patron, an elderly woman joined us at the stop. The woman was merely asking me where the bus was when at the same time I should have been working on the escalation my daughter was going into. Suddenly, the dam broke and my child went into full meltdown mode. I was trying to explain to the lady my child is autistic . The lady covered her ears and nodded as if she understood. When I got the noise level down with my daughter and we could see the bus in the distance, the lady gently squeezed my arm and said. "I know your daughter is artistic but why does she scream like that?" This is only one of many. But stay with it.

    Posted by Shaamex April 3, 09 08:09 AM
  1. Thank you for all the eye opening information!! I had never realized there could be "different forms" of autism. I have an 11 year old son who is very bright at school and quite happy as a child (so I think). However, he seems to be either "unaware" of situations surrounding him or simply taking too long to respond to a stimulus sometimes. Yes, he's had a hearing problem which has been treated and is "over" now. So I wonder if he would fall into any of the "different levels" of the autism. How could I find it out? Thank you much.

    Posted by Marcos_BR April 3, 09 08:30 AM
  1. "If the increase were due to children being reclassified, we would see the autism diagnosis increase and other disabilities decrease -- this has not been the case."

    That statement is totally false.

    A study by Croen et al. (http://www.ehib.org/paper.jsp?paper_key=AUTISM_PREV) looking at children born between 1987-1994 found that over the course of 8 years the diagnosis of autism increased by 9.1 per 10,000. Over the same period, the diagnosis of mental retardation decreased by 9.3 per 10,000. One very likely explanation for the increased prevalence of autism diagnoses is that what was once diagnosed as MR is now diagnosed as autism.

    Posted by unicow April 3, 09 08:53 AM
  1. My father has been convinced by his ex-wife that their 14 year old (who they adopted at birth) is autistic. I totally do not agree with this - And this is not because I am in denial, I just see NO characteristics in her as I am reading out here! She thrws fits in public, cries when she doesn't get her way, beats her mother up, won't go to school, etc -- Yet my father tells me she has straight A's and is just short of a genius.. She won't take a bath, doesn't want to do anything she is told.. To me this sounds more like a discipline problem?? I am looking for research on this because my father is being literally abused by this situation and I feel that autism is the crutch his ex-wife is using to explain the childs' actions.. Does anyone know where I can go to read more on this and maybe figure out what's going on??

    Hi, CG, thanks for commenting. What a tough situation. It's hard to know what's causing her behavioral issues, but if they are impacting your father's life so severely, he should seek professional help and screening for the child. In terms of general research, one of the best sites out there is AutismSpot.com -- the have a huge library of videos from parents, professionals, therapists, and experts on many, many different issues and topics pertaining to Autism. I'll be writing more about them next week, but that site is a great place to start. -- LMA

    Posted by CG April 3, 09 09:44 AM
  1. My 7 year old son has been diagnosed with Asperger's since 2 1/2. He is dual exceptional. This means he is both gifted and disabled. He is in the gifted program at his school but he has a TSS who works with him on his social issues during the day. She shadows him in the class room. His processing speed is on the low side, so sometimes his speed to answer is slow. He is very happy and talkative but sometimes does not know that he is being pushy or how to start or end a conversation with his peers. He is more comfortable speaking with adults. You should be able to go to your school district and see if they can help with an evaluation and possibly get him some assistance.

    Posted by susan April 3, 09 10:43 AM
  1. Aspergers can be a great strength. I have it, and have been very sucessful, socially and financially. And know plenty of others in the same boat - I challenge anyone familiar with Aspergers to look into the lives of Warren Buffett and Bill Gates, just to pick a few, and see how many of their characteristics fit.

    Which is a long way of saying its a hard road - I wouldn't put my childhood as an ideal, but it can be an advantage as well. I'd never want to be "cured" of my aspergers, I see it as a great strength, as well as a weakness. Which is pretty much how life works

    Posted by anonymous April 3, 09 12:37 PM
  1. LMA - I am glad to read your coverage of National Autism Awareness month. Will you be covering the release of Jenny McCarthy's new book? It seems as though Ms. Bradford believes in nutritional therapy to help treat autism, but in the reviews I've read of Ms. McCarthy's book, she has claimed to heal her son with various treatments (including a casein- and gluten-free diet) - I'd be interested to hear your take on her story. Thank you!

    I'll try to get a hold of a copy -- thank you for the suggestion, heartseek! Personally speaking, we've been doing a GFCF diet with our son for about 5 years now and we've seen many positive changes. -- LMA

    Posted by heartseek April 3, 09 12:39 PM
  1. To GC: A lot of the issues you're describing can be symptomatic of an ASD. For example, the refusal to take a bath could be for sensory reasons. Non-compliance is a huge issue for many people on the spectrum and if you think about it, most 14 year old girls would rather die than throw a fit in public. Not caring about social implications are a HUGE marker. But of course kids need to be thoroughly evaluated and diagnosed by a specialist. My PDD-NOS son was diagnosed at at 2, and is now 6.5. I can personally attest to the fact that early intervention and therapies are key to improving the quality of life for both the child and the entire family. I wish people weren't so afraid of an autism diagnosis, because, in fact, it's required to get the necessary help that is available. Who cares what you call it? Some kids need help. And that's okay. My son is still PDD-NOS, but he's doing SO much better & he's a happy, thriving child.

    Posted by PandSmom April 3, 09 12:54 PM
  1. I would like to add that make sure all of you vaccinate your children. There are no statistics to support the false claim that MMR vaccines are linked to Autism. There is no reason these once near dead diseases should be coming back. So before people start listening to those few stars in Hollywood rant against these vaccines study up on the subject. Autism is hard and a real diagnosis and it's even harder when one cannot explain why it happened, but that does not mean one should leave their child open to the possibility of getting these diseases because someone said something based on false information.

    Raynee01, I respect your point of view, but want to point out that there is plenty of anecdotal evidence (that is to say, not from clinical trials) to support the idea of vaccine toxicity in some children. I agree that it's important to study up on the subject and not just follow whatever someone in Hollywood is saying, but blindly following the status quo might not be the way to go, either. Many people are seeking out a middle ground -- vaccinating their children but not following the traditional timeline in order to spread out the doses and minimize side effects. -- LMA

    Posted by Raynee01 April 3, 09 01:20 PM
  1. Lylah,
    Thnaks for dedicating so much time to an important topic. I am the mom to an almost 4 yr old little girl with PDD-NOS. We were lucky to have been advised by our pediatrician @ 18 mos since she was only saying 3 words to have Early Intervention check her out. I believe that saved our little girl's future. We were able to get speech and behavioral therapists into our home and then able to have home based services thru our pre-K program now as well. Our little one who a year ago could not say more than 1-2 word phrases or simply repeat simle words, is now saying full sentences. It's been an amazing journey and we continue to struggle with behavioral issues when she cannot "find" the language to tell us what she needs but she's made tremendous progress. We don't do any playdates, as her behavior can never be known until we're in the situation and if she's unhappy, the flailing around and screaming is alot for people to take. And certain events outside the home (grocery shopping or going to church) can sometimes be extremely stressful b/c she doesn't want to be there and can throw extreme tantrums. The toughest part for me is dealing with the "looks" I get from others - the stares of people who lack an appreciation of what we're going through. So I'd ask anyone who reads your articles to stop the next time they see a parent struggling with a child in a public place and just offer support. You may be surprised that by simply asking if the parent or even child needs help - it can difuse the situation. Thanks.

    Posted by Sue April 3, 09 01:51 PM
  1. "...But do I suffer from autism? no. I suffer from people's ignorance, from being constantly misunderstood & rejected becuase I'm 'different', because my priorities in life are different (I want to change the world for the better, I'm obsessd with justice & creativity - I'm NOT interested in socialising & chatting shallow rubbish..."

    If you're not interested in socializing and chatting, then why complain about people rejecting you? I bet that sometimes it's not misunderstanding, it's understanding perfectly well that you don't want to socialize so if a person wants to socialize and chat then he or she should approach someone else instead of trying to socialize and chat with you.

    Posted by Joseph April 3, 09 02:03 PM
  1. I can't tell if this blog is hosted by the Globe or just Boston.com, but either way, I'm pretty appalled that you have allowed someone with zero medical knowledge to post that kids with autism can be "cured" and that "plenty of anecdotal evidence" links vaccines to autism. This is fairly dangerous misinformation, particularly in an era that has seen outbreaks of formerly vanquished infectious diseases. Yes, autism is apparently on the rise and is a terrifying diagnosis (although not to those who post about how glad they are to have it). But let's not scare people into ignoring what every single medical study has said: there is no link between vaccines and autism. Period, full stop.

    Thanks for taking the time to leave a comment, Katekilla, but you have misread the post entirely.

    Nowhere does it say that kids with autism can be "cured," and in my reply to the comment about vaccines I specifically wrote that anecdotal evidence is a.) not from clinical trials and b.) in support of vaccine toxicity in some children, which is *not* the same thing as linking it to autism. My reply goes on to suggest immunizing over a longer period of time, so children can minimize the possiblity of vaccine damage (which the CDC has acknowledged and has even set up an organization to address) and still maximize the immunization benefit.

    Please take a few minutes to reread the post. If you still feel that there is misinformation here, I'd be happy to address it. You don't mention whether you have autism or have a child or family member who does, but I'd be happy to hear about your experience with autism as well.

    To answer your other questions: I'm a Globe staffer, the blog is hosted by Boston.com, which is part of the Globe. Hope this clears things up for you. -- LMA

    Posted by katekilla April 3, 09 02:06 PM
  1. LMA,

    You can respect someone's opinion and be guilty of offering terrible advice. If we know anything about autism's cause it is that it is not caused by vaccines in any way shape or form. Not only is the MMR not correlated with a higher prevalence of autism, thimerosal is not correlated with a higher prevalence of autism. Furthermore, since thimerosal was removed from vaccines in an attempt to maintain the public's confidence in the vaccine program, not only has there been no decrease in autism but the prevalence of autism continues to rise. The US vaccine court, in which the evidence must only amount to 50% and a feather's worth of proof, has clearly stated that there is overwhelming evidence against the vaccine-autism hypotheses. Many young parents, some well educated, were not alive when vaccine preventable diseases led to the death or crippling of so many children. Before the polio vaccine was available nearly 20,000 people a year contracted this disease that kills or cripples a child at a very high rate. Measles hospitalizes 20% of persons who contract it and around 200,000 people a year are blinded by measles according to the WHO. Nonsense spouted by people who insist that vaccines are deadly/unnecessary/should be delayed is backed merely by anecdote but the plural of anecdote is not data. That is why we should pay attention to scientific evidence and not speculation. This type of speculation has led to million of dollars worth of research. If you would like to effectively advocate for persons with autism, you should abandon such notions and support more money for treatment research and services. But you and most parents who hold these beliefs will continue to choose faith over science. The recurrence of the many devasting vaccine-preventable diseases is underway and is fostered by your position and the position of those who choose to believe rather than to critically evaluate.

    BA, thank you for your comment. You'll notice that in the response to the previous comment I talked about vaccine toxicity in some children, not a link between vaccines and autism. I also did not suggest avoiding vaccination, I suggested changing the timeline. Spreading four shots out over the course of 6 weeks rather than getting them all in a single visit does not pose a health risk to the child or to the population in general. -- LMA

    Posted by BA April 3, 09 02:12 PM
  1. The online magazine Slate.com published 2 articles related to this topic this week. I recommended reading them for all those touched by autism spectrum disorders.

    Sydney Spiesel explains why parents believe in autism cures that don't work.
    http://www.slate.com/id/2215076/

    Arthur Allen on how the vaccine/autism theory may be dead, but the treatments live on.
    http://www.slate.com/id/2215128/

    Posted by Samantha April 3, 09 02:23 PM
  1. Suggesting changing the timeline is a bad idea that I lumped together with related positions such as avoding vaccines altogether. You refer to vaccine toxicity for some children rather than others that might lead to autism. There is no solid evidence for this opinion and the costs of delaying vaccination can be great. Rather than providing your own opinion on a topic that involves the well being of the general public, you should consult medical researchers with the proper expertise to offer an opinion. Again, the plural of anecdote or intuition is not data. Try the autism researchers at Children's Hospital next time you cover this topic. Your opinion is no less dangerous than suggesting vaccines be avoided. The reason why vaccines are scheduled as they are is based on research about when a child is susceptible to these potentially deadly childhood diseases.

    As to the interviewee's comments on treatment, there is also no evidence that vitamin supplementation or dietary interventions help. In fact, several clinical trials of the GFCF diet have been delayed because of the negative health impact this diet often has on children leading many participants to pull out of the studies. Only one approach, providing proper and effective educational and clincial treatment to a child, has been found to produce a profound impact on development. Yes, people with autism learn but many need intensive assistance to learn the skills necessary to live fully included and independent lives.

    Thanks, BA. Here's a link to one doctor's take on the vaccine schedule: U.S. News interview with Lawrence D. Rosen, vice chair of the American Academy of Pediatrics's section on complementary and integrative medicine.

    For readers who may be interested in learning more about debate about dietary intervention and autism, AutismWeb.com has some information and links, as does the Autism Research Unit at the University of Sunderland. -- LMA

    Posted by BA April 3, 09 02:50 PM
  1. The author interviews Mika Bradford who despite being an "autism advocate", also works for a nutritional supplement company. So, surprise surprise she says that diet makes a difference. Can you say "conflict of interest and bias". However all the well designed studies refute that diet is helpful. Just like all the anti vaccine crap that's out there. Ms. Bradford believes vaccines contribute to autism based on her website, however that has been proven false so many times that it makes me sick.

    Posted by MattyB April 3, 09 03:40 PM
  1. "plenty of anecdotal evidence"=stories from people who probably have no clue what is really going on. How can you can have "anecdotal evidence" of vaccine toxicity? Either you have a clinical diagnosis of a side effect from a vaccine, or you have baloney.

    So, if your child eats, say, shellfish, and gets hives an hour later, you'd require a clinical diagnosis to think that maybe she has an allergy and that it was possibly caused by shellfish? -- LMA

    Posted by Moopheus April 3, 09 04:26 PM
  1. Also, what about the challenges parents who have ASD may face when they have children who turn out to not have ASD? http://www.aspiesforfreedom.com/showthread.php?tid=12544&page=4 has some interesting comments on that. It includes this bit:

    a) someone talking about his teen son who has more street smarts than high test scores
    b) someone else consoling him with the reminder that success takes networking, social skills, and luck too
    c) a third person basically asking "why do you want a child like that? if you don't have people skills you can go into the professions instead" [hold it, how many of us want a doctor, lawyer, teacher or nurse without people skills?]

    and lots of other issues (and lots of other children!) get addressed in the thread too.

    Posted by Joseph April 3, 09 06:28 PM
  1. Thank you for sharing your experiences. I hope you will continue to do so. You've obviously hit a nerve with the pro vaccine crowd. I also read one of the Slate articles - there was too much generalization for me to read it as a credible. As with food allergies, the issue of mercury toxicity (or any toxicity) is individual. A member of my family had suffered for years with mercury toxicity, which was later effectively treated by integrative medicine. I am not anti-vaccine, but have adopted a slow and cautious approach with immunization due to family history. Every story and experience helps many of us piece together what might be applicable to our personal situation since traditional medicine hasn't yet produced an autism cure.

    Posted by tortoise April 3, 09 07:06 PM
  1. "You must pace yourself to prevent burn out and, regardless of your financial resources, know that you can positively impact your child's life."

    Also, what about grandchildren? For example, what if your child grows up to be an adult who copes well with a steady routine and lots of quiet, falls in love with someone else like that, they have a baby, but the baby cries loudly at unpredictable times instead of understanding their need to avoid sensory overload? All parents need support, whether they have any kind of ASD or not! I just don't know if the pacing you're talking about includes grandparenting or if there's non-grandparent support available for this or what.

    Posted by Joseph April 3, 09 08:27 PM
  1. Your comments linking to other sources supporting dietary interventions and, I'm not sure what, are completely bogus. The University of Sunderland link goes to a group that has 0 peer reviewed publications that I can find on PubMed and then the associated publications page listed talks, not peer reviewed information:

    Research & papers
    A gluten- and casein-free diet as an intervention for ASD (Powerpoint) handouts (PDF)
    Presentation at the National Autistic Society conference September 2008.

    Autism as a metabolic disorder | Gut permeability and autism
    Information about the metabolic model of autism to which we subscribe to (Updated).

    The Sunderland Protocol: A logical sequence of interventions
    Step-by-step information on various biomedical interventions for autism (Updated).

    Unorthodox interventions for autism | Diet & autism (1) | Diet & autism (2)
    Gluten- and casein-free dietary intervention for autism.

    Immune system in PDD (PDF)
    The potential relevance of the immune system to PDD.

    Pharmacotherapy (1) | Pharmacotherapy (2) | Pharmacotherapy (3)

    Use of medication for PDD (PDF)
    Details of medications used to manage autism.

    The incidence of autism | The demographics of autism in the UK
    The changing numbers of people with autism.

    Environmental factors in autism | Biomedical factors | Autism & vaccination
    The potential role of environment to autism.

    Molecular modelling of peptides | Peptides & executive functions
    The potential role of peptides to autism.

    Gulf-war syndrome | Overlapping syndromes
    Collected articles on fatigue-related syndromes.

    No supporting publications but speculation. Are you in the pocket of complementary and alternative interventions? I'm sure you and other vaccine questioners feel everyone that does not accept the mommy instinct is in the pocket of BigPharma. Why would you refer to people doing no research of note on autism in the UK when there are many researcher here in Boston that are among the most respected names in autism research. The link to the AAP representative of quackery, I mean alternative and complementary medicine, why not ask a doctor that practices medicine. Modern medical science has only been associated with continually increasing life spans, cures for cancers that once killed and the general improvement of public health. No, it would be better to trust a doctor that thinks energy healing is superior to chemotherapy. We know just how effective those "traditional" approaches to medicine were because people lived so much longer back in ancient times. Again, consult the medical experts here in Boston that deal with autism every day rather than searching to confirm your soft thinking.

    BA, again, thank you for taking the time to comment, though really, there is no need to be insulting or condescending.

    The point of this post wasn't to argue about vaccinations, or risks to herd immunity, or what causes autism, or why one type of therapy is better or worse than any other. It was to generate discussion about ASD and parenting issues.

    For the record, I never said that dietary intervention is the best, or only treatment -- though I must have misread your comment, as I thought you were asking me to provide more info about it. There are many, different types of therapies out there, and for some people a combination of therapies works best for their child -- different children respond to different therapies in different ways.

    Some of the best autism researchers out there explore some of the theories that you call "soft headed" (Dr. Tim Buie, a pediatric gastroenterologist at Mass General, is one of them -- my son has been his patient for some time -- but in spite of his credentials, based on your comments it seems that you'd probably discount his work with Harvard University and Mass General, given that it's in a field that you seem to think is irrelevant quackery (i.e., not ABA). I'd direct you to the NECC website and the great work they're doing with ABA and some local public schools, but I can see that you are already very familiar with it. Applied Behavior Analysis works wonders for many people, but not everyone can afford to send their child to a specialized school or get the proper training to do ABA on their own. Sometimes there are underlying problems that complicate the autism issues. Some parents feel that an alternate or additional type of intervention is necessary or is helping their child. There's nothing wrong with that. -- LMA


    Posted by BA April 3, 09 09:05 PM
  1. I'm not going to tell parents how to treat their children or to discern who is and is not an expert here, but would just add that professionals who study autistic spectrum disorders need to take a multi-disciplinary approach to figuring out what causes autism and how to help those that have it. For example, when I was growing up in the 70s and 80s, the issues of children with AS were considered something that a child would grow out of. Now, similar children are being viewed as "disabled". The children currently labeled as "disabled" were no biologically different from myself or other AS adults who earned degrees, married, took jobs, and lived near normal lives. I never had fits but had the communication and loner-type behaviors associated with AS. Why was that okay in my childhood but not now. This is a question for sociologists.
    I would echo what some other of the adults with AS have said. I would NEVER want to be "cured" because that would mean getting rid of me. As a musician, I need to be slightly autistic to get ahead. It would help if employers were more accepting of AS adults . The discrimination has cost me so much in terms of salary and job skills, yet I was graduated with a B.S. degree in Government from Suffolk University, cum laude. I've been fired many times for reasons I don't understand. I hope kids with kids with AS today get that chance at a normal education but if parents and school systems label them as disabled, I'm afraid they will not.

    Posted by Stephanie April 3, 09 09:33 PM
  1. Thank You for the article. My 10 year old son was diagnosed at 3.5 years as having PDD-NOS. Our pediatrician in PA brushed off his developmental lag. Our pediatrician in MA knew that there was something wrong.He still greatly struggles with speech and social interaction. In the course of our journey my wife and I have met many parents and children that have the diagnoses and whose abilities vary widely. Our son is in a special education program that stresses Applied Behavior Analysis (ABA) and we have seen some improvement. I urge all parents that have an issue with their child to get a diagnosis- Get them into early intervention, and if necessary get an Advocate to help you get as many services for your child as are needed. It is critical.

    Thanks for commenting, Curt! It's wonderful that you were able to get your son into an ABA program that's helping him. And thank goodness for your ped in MA who didn't brush off the developmental lag... -- LMA

    Posted by Curt April 3, 09 10:11 PM
  1. As someone with Aspergers, I find the vaccine causes autism argument to be idiotic. The evidence just isn't there. In my family its quite clear that there has been a lot of aspergers in the family tree, way previous to vaccines. Genetics? Clearly. Occam's razor people.

    Aspergers is a strength as well as a weakness. I am insulted by having it classed as a disability. The trick is to go into one of the fields where being hyperrational is a benefit, not those in which interpersonal weakness is a handicap. Sort of like a short person avoiding the NBA. Which is not quite the same as a handicap.

    An ex-girlfriend of mine was clearly dyslexic. She was always very grateful that she'd never been officially diagnosed and tracked, because as a "dyslexic" kid it would have been considered an achievement for her to go to college. As someone for whom the world had high expectations, she became a doctor and a prof. at Harvard Med School. Expectations and labels matter. Sure, more services are nice, but not always a long term favor.

    The Aspergers debate is skewed because it is always the low functioning, troubled people with Aspergers who are discussed - not the happy successful ones. Classic selection bias. The first group certainly exists, but so does the latter.

    Excellent points, Anon! Thank you for weighing in! -- LMA

    Posted by Anon April 4, 09 12:11 AM
  1. I believe that Scientology has developed a special learning technology that is highly effective for children diagnosed with autism.

    Posted by Ann Matranga April 4, 09 02:18 AM
  1. As a parent of an Aspergers child I related deeply to your article. We experience the entire spectrum of behaviors, pain, sadness and victories and have been fortunate enough to have caring, knowledgeable medical and educational professionals at key points in our son's life. My son has two siblings who live through his autism as well. As a family we endure my son's disabilities and rejoice at his victories. It is so important to emphasize that there is Hope!! My son is just finishing his freshman year at college and though we know there are challenges to come, we know there is Hope!

    Posted by quovadis April 4, 09 06:58 AM
  1. I am an Aspie adult, with an Autistic daughter and an Aspie father. First, my daughter was diagnosed - age 7, then I was diagnosed - age 30, my father has yet to be diagnosed but shares traits with my daughter and I.

    I just want to say that many of the different perspectives on autism are true, or partially true, at the same time. It's true that it's difficult to raise my daughter - also true that she's beautiful and gifted - also true that it's OFTEN other people's reactions to her that are what's difficult about helping her navigate through the world, at the same time it's true that other people's reactions to her have been supportive and helpful. She dreams of going to a small school that teachs her what she actually wants to know and has NO gymnasium! (No school like that in our area.) Me - I work full time, have a bachelor's degree, am working on my master's, am rasing my daughter and son and find time to spend one on one with both of them - I didn't need any "special" help getting through school, work or college - I just got my diagnosis to understand myself better. I do have a terrible time making friends, because I can't tell when people love me unless they say so - but the four friends I have now are all the more appreciated because of the struggles and lonliness I went through before finding them - they are precious. My dad - he's 55 years old and so much like me. He's great at research, of topics others around him can't figure out - he talks about his topics constantly and doesn't look people in the eye, classic Aspie traits. I've known adults in their 80's who seemed just like us - very Asperger - but were not diagnosed (yet very successful.) A trait that seems to be very Aspie is the desire to succeed and simply not stopping movement toward goals even in difficult situations, very high standards for self, perfectionism. I know "low functioning" folks too, who can do things higher functioning or neurotypical folks can't - like one young man who can always see three rainbows, when most people can only see one.

    It's my opinion that it's genetic, not caused by harm - because I have a father and daughter both on the spectrum along with me, we got more than my daddy's green eyes! I feel there were Aspie-folk in my family many generations back, like my grandpa who could count bricks by looking at a wall. I don't feel it needs cured, absolutely not! I do feel we as a society should focus on helping EACH INDIVIDUAL HUMAN (autism spectrum or not) reach their poteitial as a person. I don't feel we should worry too much that different people have different skills, because put together, we as a society survive and thrive because of all our different abilities and perspectives. I feel that it would be impossible to separate my Aspie traits from me, same with dad, same with my girl. :)

    Posted by jen April 4, 09 11:45 AM

  1. Dear Readers and Lylah,

    WOW! What a great assortment of thoughts and ideas regarding autism spectrum disorders! I think I will jump right in and put a few thoughts on the table. The controversies that surround our families and the course of action we each choose in order to improve our children's quality of life will continue for years to come.

    First, I do not believe all cases of autism are prompted by vaccine reactions. I absolutely believe that genetics plays a role, how could it not? In my opinion, genetics can never be removed as a factor from the equations dealing with conditions of the body. There is a difference in a factor being a variable verses the catalyst that initiates the series of events. My circle of friends and families within the autism community consistently reference the saying "The apple doesn't fall far from the tree." In my family I would be that tree, since I tend to over analyze situations, can be a bit OCD in having things in order and am very literal.

    In the circumstance regarding my son, my family has documentation of actual adverse reactions noted in our pediatrician's records one year prior to my son's diagnosis and my family ever hearing the word autism. If I were to have said my child had a reaction to a sulfa drug and it resulted in a rash there would be no controversy. Yet I say my son had a reaction to his vaccination and had breathing striders within 24 hrs needing ventilator in order to breathe and I am no longer viewed as an educated parent but variable that challenges conventional status quos.

    Vaccines absolutely have a purpose and place in society but the act of vaccinating does not go without risk. If that were the case there would be no need for parents to sign an acknowledgment of the minor and major reactions that can occur which do include a variety of manifestations including effects on the nervous and immune system as well as death. Information provided by the manufacturers with each vial describes this in great detail. With that being said, our own government recognizes these real risks associated with vaccines which prompted the creation of the Vaccine Injury Compensation Program for circumstances of this nature.

    The Increase in autism: In my humble opinion, the debate over whether the increase in autism diagnoses is real or just better diagnosing is now typically debated by individuals who do not work in the disciplines that serve individuals with autism. Bring a group of educators, physicians, BCBA's together and ask them if fifteen years ago they had the same number of children with these unique profiles and behaviors and I can promise you there will be a resounding "NO." It is openly acknowledged by our government and state agencies that autism diagnoses have continued to increase.

    I do respectfully acknowledge there are adults who are now being diagnosed with autism and that each of you is valued as a person and individual. The contrast I made previously is that the autism of today is that of children who have severe communication delays, an increase in maladaptive behaviors, and lack self help skills in areas as simple as taking their clothes off or independently using the restroom. I love my child and the children I work with beyond words but I want these individuals to have every opportunity at living a joyful life unlike what many live by being trapped in a world where their simplest of needs cannot be expressed or conveyed.

    States like California have data showing that the increase in autism has been significant and disproportioned to the increase in other diagnoses and disabilities. The need for programs through state health and human services as well as public education systems across the country continues to increase. These children would in no way pass as "quirky" unless your definition of quirky is squealing, making loud noises, randomly repeating words, being 10 and not yet toilet trained, taking your clothes off at any given moment, touching every thing you see and putting non-food items in your mouth, oh and did I mention not being able to communicate?

    While I do work for a company that manufactures nutritional supplements, I provide technical support on the role of vitamins and minerals. As a parent who has had her child on a "special diet" for over eleven years, has been divorced and at times worked two jobs to meet the therapy, educational and medical needs of her child, I am the last person to take lightly the suggestions I provide any consumer. To imply that my professional position does anything other than positively impact my desire to see families succeed in taking on the difficult challenges in changing the foods their children eat and find ways to provide nutritional supplements or medications is insulting. Professionally I make suggestions based on individual's dietary needs, physical manifestations and physician's diagnosis or recommendations. Nutritional deficiencies and the need for dietary exclusions or modifications are associated with many medical conditions.

    I never use the word "cured," however I have had the opportunity to see and work with children whom appear to have "recovered" from the symptoms of autism. Analytically this should not be such a point of controversy since autism is now viewed as a neurobiological condition. If three different people each experienced the same exact injuries from an auto accident and received the same medical and therapeutic supports, we would all agree that the outcome would look very different for each person. This would all depend on their state of health at the onset of the injury as well as their genetics and how their body heals and at what rate. It would also hinge on their life style and what positive and negative behaviors were embedded in their daily lives. A person, who runs, drinks plenty of water, doesn't smoke or drink, eats the appropriate amount of fruits and veggies, will respond differently than a sedentary individual who eats excessive amounts of fats and sugars, drinks excessively and smokes.

    Bottom line, autism is no longer viewed as a disorder of the brain alone but a condition with many facets. I believe in treating the whole child which means addressing all issues with a multidisciplinary team approach. For my family this has included a Family MD, Gastroenterologist, ENT, Speech therapist, OT, Board Certified Behavior Analyst, Nutritionist. Our children are too complex to assume that one and only one area of need should be addressed.

    As for families whose children are indistinguishable, I congratulate them whole heartedly and rejoice in the triumph of their child having a full life. It amazes me that as a community for those of us who continue to face the challenges of autism cannot be supportive of those whose lives have improved so much so that the complications of autism no longer impair every aspect of daily living.

    I find it interesting that many professionals from various disciplines will be the first to say our children can improve but -- what they are really saying is "their way is the only way to help your child." Take away the label of autism and I see children who have bowel issues which include ongoing diarrhea, bowel with-holding and impaction that require a KUB (kidney, urinary, bladder x-ray) in order to determine if there is a blockage. I have children whose diet consist of 4-6 foods, are failure to thrive and have difficulty in gaining weight. I see children whose skin is so dry and ridden with eczema that leads to bacterial and fungal infections, children who sleep at the most 2 hours at a time only to wake up screaming in the middle of the night only to resist the consoling of the parent. These are just a few of the challenges our children face and with great respect I with any other analytical professional would recognize that these complications should be addressed and would impact the child's quality of life, well being and ability to learn.

    My message, as parents and professionals who are responsible for the overall well being and care of these children, we must NEVER let the label of autism over shadow the physical, medical and nutritional needs they present with. We must address and support the needs of each individual and their family, whatever they may be. May autism awareness month bring each of you hope and the encouragement you need to face your unique circumstances while improving your loved ones quality of life!

    If you still don't have the answers you need or the information you want? For more thoughts on anything autism visit my blog at www.autismspot.com

    Sincerely Yours,

    Mika Bradford

    Posted by Mika Bradford April 4, 09 03:18 PM
  1. Spreading out childhood vaccines may not affect whether children are properly immunized...presuming that they get all the shots they should have. However, it does require that children have many more total injections. This equates to more total pain for the child (greater number of shots), more chance for injection site related infections (by splitting combo vaccines), higher cost (more doctor visits which you will have to pay for), and more chance for medial error. This last point is important and often underestimated. While no knock on the medical industry, every interaction you have with a physician has a possible negative outcome. Maybe you get the wrong shot, or one too many. Maybe you catch a cold at the office. The task is therefore to minimize the number of visits you have while maximizing the the benefit from those visits.

    If the perceived (and unproven) advantages of spreading out vaccination outweigh the known multitude of disadvantages, then go for it. However, keep in mind that there are risks to this approach as well.

    Posted by bv April 4, 09 04:07 PM
  1. I don't know about anyone else, but I found the views of "Generation Rescue" to be absurd junk science. A spokesperson was on Larry King last night. The causes of autism cannot be reduced to coincidence and the real scientists understand the laws of cause and effect. Professionals do not agree amongst themselves, and the last thing any of need are non-professionals telling autistic people there is something wrong with them. So, that's just a warning to parents to not listen to this organization. There is something wrong with the parents who are wondering what is wrong with their child.
    To jen, the author of the post above, well said! You all sound like a wonderful family. :)

    Posted by Stephanie April 4, 09 04:25 PM
  1. I have worked as a behavior specialist (implementing ABA under a BCBA) for a year. I have done a LOT of research on Autism and the full body effect of autism on children. I am a strong believer that there are genetic factors in autism. I know of a family with 6 biological children who all have autism. I also believe that there is some pre-disposition to autism that, when triggered by something environmental, can cause autism. Be it a vaccination (which i agree there is not enough proof of, and they took away the thimerasol and the autism rate is STILL 1:150), or some other factor.

    Posted by M. April 4, 09 07:16 PM
  1. This was an fairly informative article, without too much a slant on things. Being a special educator with training and focus on teaching those on the autism spectrum, it's important for all of those people who suspect that a child may be on the spectrum... get a neuropsychological evaluation. Primary care doctors can make the referral. This is the best way for your child to get the diagnosis they need, which will lead to the proper education placement and outcomes.

    I think that it's important to note that going gluten & casein free benefits those who have food allergies and is not infact a "cure" for autism. Please take careful medical advice before trying your children on this diet, instead of the writings of anyone with a blog on the internet, as it's difficult to uphold at both and school.

    Best of luck.

    Posted by Stellar_D April 4, 09 07:22 PM
  1. "So, if your child eats, say, shellfish, and gets hives an hour later, you'd require a clinical diagnosis to think that maybe she has an allergy and that it was possibly caused by shellfish? -- LMA "

    If we're going to use analogies, we need to make sure we're comparing apples to apples. Let's correct your analogy by adding the following 3 background facts to your hypothetical:

    1) After countless studies, no such thing as a shellfish allergy has ever been discovered. The heads of the CDC and every other reputable medical organization says there is no such thing as a seafood allergy.

    2) Some random Hollywood celebrity says that seafood allergies are real.

    3) Eating seafood prevents you from getting lots of very serious diseases.

    Posted by SportsAuthority April 4, 09 07:41 PM
  1. This statement from your article is incorrect:

    "There are so many disorders that fall on the Autistic Spectrum -- Asperger's, ADD, SID, PDD-NOS, just to name a few."

    First of all, it is the autism spectrum. Second, ADD and SID are not spectrum disorders. (And SID is no longer called that, it is SPD). Third, there are 3 autism spectrum disorders, Asperger's, PDD-NOS, and Autistic Disorder, which are also Pervasive Developmental Disorders. The other two PDDs are Rett Syndrome and Childhood Disintegrative Disoerder. Please check the DSM-IV.

    Thank you, barbsboy! -- LMA

    Posted by barbsboy April 4, 09 09:37 PM
  1. Thank you for this article, and for all the postings above. As a parent, the one thing that has been MOST off-putting is the "tap-dancing" that so many professionals do - from the schools to the physicians. Very few people will call it what it is - AUTISM. So many still believe - erroneously - that this condition is a "death sentence" for the individual... that there's nothing that can be done. In our own case, we lost a year because no one would really "name the beast." We'd ask, and they'd just say "Well, we're not really sure..." The pediatrician was in complete denial, and the school - who was providing just amazing services to our son - was being concerned about overstepping their bounds by making a "diagnosis" when they are not medical professionals. There is hope - we worked for over a year with the school district before we found and began working with a DAN! practioner, and in just one year, have seen our son progress far beyond anyone's expectations! We are using a variety of nutritional (vitamin/mineral) therapies, after treating severe intestinal and yeast infections, and are now using a homeopathic approach to detoxify the heavy metals from his system. Our son is improving. He is closing the gap on many many levels. There is hope, but it is time and labor intensive. I cannot work full time as I need ot manage his GFCF diet, all his supplementation, and oversee the use of "the listening program," which is VERY regimented. All that said, it is worth it. To see him actually engage with his peers, to play and have fun with his sister, to WANT to see family and friends - it just means the world to us. We'll happily tough it out for the next few years to give him the chance to have a successful life. We understand that "success" for our son may NOT be the same as "success" for a NT kid, but whatever it looks like, we will be supportive and proud of him.


    Posted by Laurie Wagner April 4, 09 09:39 PM
  1. My 14-year old son was diagnosed with P.D.D., N.O.S., bipolar and a severely compromised cognitive profile at age 6-years of age. I thought my life was over. At that time he was my only child so I poured every ounce of energy into trying to "cure" him. I got mixed messages along the way. Professionals gave him different diagnoses and would argue with me or be rude if I agreed with one professional over another. When my son was a toddler and undiagnosed, he would have these horrible tantrums and people would stare at me like I was the worse mother in the world. After he was 2 other mothers refused to have play-dates with me because he was so unpredictable. I tried to have him diagnosed when he was 4 and took him to some of the biggest names in the Boston
    autism community. Unfortunately, we were about 5 years ahead of the trend. People were mixed about the effects of A.B.A. My son is very social so some professionals told me that he couldn't be on the spectrum because he remembered people's names and how he knew them. Then there were the ongoing tantrums. Mood disorders just weren't diagnosed with much frequency when my son was little. He does have major allergies but food is one of the few the few joys hegets in life.

    I don't regret all the hard work that went into trying to get him treatment.
    I also don't blame vaccines or diet. All children and families are different and we must respect our different approaches. My son went into a residential program at 10-years of age because we were afraid he would hurt either himself or his very fragile 4-year old sister (she was a former 24-week premie.) It has been through the expertise and medical team of all the different people who currently live and work with my son that he has found some peace and a childhood. My hope is that he will reach whatever his maximum potential is and feel good about himself and his life. He will never be "cured" .Some children do recover. He was never going to be one of them. The happiness and acceptance that he has found in residential life brings me great joy and hope for his future.


    S.My son

    Posted by S.F. April 4, 09 10:45 PM
  1. I can't tell you how many people come to my blog with that same question.
    Best wishes

    Posted by Whitterer on autism at wordpress April 5, 09 12:16 AM
  1. I would be very careful with a diagnosis of autism. Our medical system is such that doctors and insurance companies gain if we can all be diagnosed with some condition that requires ongoing care. Obviously the whole medical establishment earns more if they can have us all on meds, and at appointments I now live in Texas where the number of children diagnosed with asthma is absolutely astounding. Most of them are on inhalers which they need to keep stocked, and they have regular medical appointments, all activities which keep doctors very busy and wealthy. Just be careful, though not neglectful. www.dimequecrees.com

    Posted by Ana April 5, 09 10:53 AM
  1. The idiocy over a link between childhood vaccinations and autism led to a dangerous and potentially fatal outbreak of measels in Chicago several years ago. Enough parents had failed to immunize their children to cause a localized outbreak, and children who were too young to be immunized were put at serious risk. It's about time that this preposterous claim with no scientific evidence be put to rest before it creates a significant healthrisk. http://www.sciencebasedmedicine.org/?p=384

    Thanks for the link, Colin. -- LMA

    Posted by Colin Principe April 5, 09 03:49 PM
  1. Thank you so much for this post, Lylah. Sorry that some people have been mean with their comments. What you are doing is wonderful. My 13 year old step-son was also diagnosed with Asperger's at age 5. I just wanted to share how important early diagnosis is. When he came into my life at age 4 (his mom is not in the picture), I totally knew there was something wrong. At first, his dad thought I was crazy, he was almost insulted. "But he is so brilliant" (he is), "but he is so loving" (he is), etc.... But I persisted and we took him to a great hospital in Belmont and he was diagnosed. I felt like the evil step-mom for a while but that didn't last long - with every day he grew older, it became more apparent. It took many years and a lot of work to get the public school system to put in place a great team that helps him navigate and really "gets" him, but I am happy to say that he is really thriving this year. I agree with all the Aspies posting here, that it in many ways should be considered an ability rather than a disability :) Certainly he can be frustrating at times, but I would not change a thing about him.

    Posted by citykitty617 April 6, 09 01:12 AM
  1. Thank you for writing this article. The information is great! As for the naysayers and people who say that vaccines are fantastic and never injure a child, the GFCF diet and biomedical is all bunk, do whatever you want to do with your child; that's your right. But don't you dare discourage people from sharing information on what has worked for them. I thank God that people have shared that information. My two year old is benefiting dramatically from the GFCF diet (including the removal of other identified intolerances) and biomedical treatments. The reality is, everyone has seen the change in her. There is no denying this approach works for some kids.

    Posted by Crystal April 7, 09 01:00 PM
  1. As the oldest sibling of an adult brother (age 46) with severe autism, I can assure you the adults are out there. The difference is that when my brother was little, they estimated the incidence of autism to be 1/10,000. Now in just 40 years, it's 1/150. The problem is that all the attention now seems to be going for children. That's needed. But the adult autism needs for those with aging parents are huge. The planning for those families MUST start now. How to start? Go to http://www.talk-early-talk-often.com/autism-social-skills.html

    Posted by Dale Susan Edmonds April 18, 09 08:23 AM
  1. Go to YOU TUBE AND type in "autism and self injury" or "autism seizures" for a raw look at severe autism. Also, there's a video called, "autism spectrum seems out of control" on youtube that's good.

    Posted by becky February 12, 10 08:33 PM
 
46 comments so far...
  1. My GOD....I typed in the single word 'autism' into Google and this was the first link that appeared. Do you know how THRILLED I am to be taken to a site that discusses all aspects of ASD? From therapy to gastrointestinal conditions. THANK YOU for spelling it out. Research now shows, without a doubt, that for most children with ASD, diet and supplements can play a huge role, as well as ABA and other therapy. For my son, therapy was useless until we changed his diet and he was finally able to concentrate of his therapy. Thanks for this article. Truly.

    JS, thanks for commenting! I'm happy to have been able to help in any way! -- LMA

    Posted by JS April 3, 09 02:21 AM
  1. Regarding the statement in the article, "If this was a condition that has risen due to better diagnoses, then where are all the adults with autism that should be accounted for?" There ARE more adults being diagnosed on the spectrum, and I am one - a 50-year-old woman diagnosed a year ago with PDD-NOS. I also know several other adults in my area who are recently diagnosed. Some are nearing retirement, while others are young people who learned of their diagnosis just as they enter college - What a difficult time to learn why one is "different"! Don't deny the truth or hide their diagnosis from your children. Help them seek out help and support as soon as you can.

    Posted by lea April 3, 09 02:47 AM
  1. why do people keep insisting that Asperger's is a 'very mild' form of autism - it is not! It is Autism in PURE FORM without speech delay!!! I have Asperger's & I strugle every day. I'm not 'mildly affected' by Autism - I'm autistic through & through. But do I suffer from autism? no. I suffer from people's ignorance, from being constantly misunderstood & rejected becuase I'm 'different', because my priorities in life are different (I want to change the world for the better, I'm obsessd with justice & creativity - I'm NOT interested in socialising & chatting shallow rubbish - I like deep conversations about deep stuff & I like to work hard without interuptions!))

    Thanks for your comment, Rozagy. I think people think of Asperger's as mild in part because the stereotype of people with autism is such a severe one. Our oldest son has Asperger's so the experience you describe is so familiar... thank you so much for sharing it. -- LMA

    Posted by Rozagy April 3, 09 05:36 AM
  1. Thank you for the article. Getting in and working as hard as you can is very good advice for an ASD child. Its not always pretty considering the meltdowns you may encounter but to move forward it has to be done. The resistance and funny looks you may get from others should be turned into even more resovle that is is worth it to fight for that child. Here is a short story from one of my early experiences while waiting for a bus that had missed its timing and my daughter knew exactly when it was to be there. She began to go into that anxious state just as another patron, an elderly woman joined us at the stop. The woman was merely asking me where the bus was when at the same time I should have been working on the escalation my daughter was going into. Suddenly, the dam broke and my child went into full meltdown mode. I was trying to explain to the lady my child is autistic . The lady covered her ears and nodded as if she understood. When I got the noise level down with my daughter and we could see the bus in the distance, the lady gently squeezed my arm and said. "I know your daughter is artistic but why does she scream like that?" This is only one of many. But stay with it.

    Posted by Shaamex April 3, 09 08:09 AM
  1. Thank you for all the eye opening information!! I had never realized there could be "different forms" of autism. I have an 11 year old son who is very bright at school and quite happy as a child (so I think). However, he seems to be either "unaware" of situations surrounding him or simply taking too long to respond to a stimulus sometimes. Yes, he's had a hearing problem which has been treated and is "over" now. So I wonder if he would fall into any of the "different levels" of the autism. How could I find it out? Thank you much.

    Posted by Marcos_BR April 3, 09 08:30 AM
  1. "If the increase were due to children being reclassified, we would see the autism diagnosis increase and other disabilities decrease -- this has not been the case."

    That statement is totally false.

    A study by Croen et al. (http://www.ehib.org/paper.jsp?paper_key=AUTISM_PREV) looking at children born between 1987-1994 found that over the course of 8 years the diagnosis of autism increased by 9.1 per 10,000. Over the same period, the diagnosis of mental retardation decreased by 9.3 per 10,000. One very likely explanation for the increased prevalence of autism diagnoses is that what was once diagnosed as MR is now diagnosed as autism.

    Posted by unicow April 3, 09 08:53 AM
  1. My father has been convinced by his ex-wife that their 14 year old (who they adopted at birth) is autistic. I totally do not agree with this - And this is not because I am in denial, I just see NO characteristics in her as I am reading out here! She thrws fits in public, cries when she doesn't get her way, beats her mother up, won't go to school, etc -- Yet my father tells me she has straight A's and is just short of a genius.. She won't take a bath, doesn't want to do anything she is told.. To me this sounds more like a discipline problem?? I am looking for research on this because my father is being literally abused by this situation and I feel that autism is the crutch his ex-wife is using to explain the childs' actions.. Does anyone know where I can go to read more on this and maybe figure out what's going on??

    Hi, CG, thanks for commenting. What a tough situation. It's hard to know what's causing her behavioral issues, but if they are impacting your father's life so severely, he should seek professional help and screening for the child. In terms of general research, one of the best sites out there is AutismSpot.com -- the have a huge library of videos from parents, professionals, therapists, and experts on many, many different issues and topics pertaining to Autism. I'll be writing more about them next week, but that site is a great place to start. -- LMA

    Posted by CG April 3, 09 09:44 AM
  1. My 7 year old son has been diagnosed with Asperger's since 2 1/2. He is dual exceptional. This means he is both gifted and disabled. He is in the gifted program at his school but he has a TSS who works with him on his social issues during the day. She shadows him in the class room. His processing speed is on the low side, so sometimes his speed to answer is slow. He is very happy and talkative but sometimes does not know that he is being pushy or how to start or end a conversation with his peers. He is more comfortable speaking with adults. You should be able to go to your school district and see if they can help with an evaluation and possibly get him some assistance.

    Posted by susan April 3, 09 10:43 AM
  1. Aspergers can be a great strength. I have it, and have been very sucessful, socially and financially. And know plenty of others in the same boat - I challenge anyone familiar with Aspergers to look into the lives of Warren Buffett and Bill Gates, just to pick a few, and see how many of their characteristics fit.

    Which is a long way of saying its a hard road - I wouldn't put my childhood as an ideal, but it can be an advantage as well. I'd never want to be "cured" of my aspergers, I see it as a great strength, as well as a weakness. Which is pretty much how life works

    Posted by anonymous April 3, 09 12:37 PM
  1. LMA - I am glad to read your coverage of National Autism Awareness month. Will you be covering the release of Jenny McCarthy's new book? It seems as though Ms. Bradford believes in nutritional therapy to help treat autism, but in the reviews I've read of Ms. McCarthy's book, she has claimed to heal her son with various treatments (including a casein- and gluten-free diet) - I'd be interested to hear your take on her story. Thank you!

    I'll try to get a hold of a copy -- thank you for the suggestion, heartseek! Personally speaking, we've been doing a GFCF diet with our son for about 5 years now and we've seen many positive changes. -- LMA

    Posted by heartseek April 3, 09 12:39 PM
  1. To GC: A lot of the issues you're describing can be symptomatic of an ASD. For example, the refusal to take a bath could be for sensory reasons. Non-compliance is a huge issue for many people on the spectrum and if you think about it, most 14 year old girls would rather die than throw a fit in public. Not caring about social implications are a HUGE marker. But of course kids need to be thoroughly evaluated and diagnosed by a specialist. My PDD-NOS son was diagnosed at at 2, and is now 6.5. I can personally attest to the fact that early intervention and therapies are key to improving the quality of life for both the child and the entire family. I wish people weren't so afraid of an autism diagnosis, because, in fact, it's required to get the necessary help that is available. Who cares what you call it? Some kids need help. And that's okay. My son is still PDD-NOS, but he's doing SO much better & he's a happy, thriving child.

    Posted by PandSmom April 3, 09 12:54 PM
  1. I would like to add that make sure all of you vaccinate your children. There are no statistics to support the false claim that MMR vaccines are linked to Autism. There is no reason these once near dead diseases should be coming back. So before people start listening to those few stars in Hollywood rant against these vaccines study up on the subject. Autism is hard and a real diagnosis and it's even harder when one cannot explain why it happened, but that does not mean one should leave their child open to the possibility of getting these diseases because someone said something based on false information.

    Raynee01, I respect your point of view, but want to point out that there is plenty of anecdotal evidence (that is to say, not from clinical trials) to support the idea of vaccine toxicity in some children. I agree that it's important to study up on the subject and not just follow whatever someone in Hollywood is saying, but blindly following the status quo might not be the way to go, either. Many people are seeking out a middle ground -- vaccinating their children but not following the traditional timeline in order to spread out the doses and minimize side effects. -- LMA

    Posted by Raynee01 April 3, 09 01:20 PM
  1. Lylah,
    Thnaks for dedicating so much time to an important topic. I am the mom to an almost 4 yr old little girl with PDD-NOS. We were lucky to have been advised by our pediatrician @ 18 mos since she was only saying 3 words to have Early Intervention check her out. I believe that saved our little girl's future. We were able to get speech and behavioral therapists into our home and then able to have home based services thru our pre-K program now as well. Our little one who a year ago could not say more than 1-2 word phrases or simply repeat simle words, is now saying full sentences. It's been an amazing journey and we continue to struggle with behavioral issues when she cannot "find" the language to tell us what she needs but she's made tremendous progress. We don't do any playdates, as her behavior can never be known until we're in the situation and if she's unhappy, the flailing around and screaming is alot for people to take. And certain events outside the home (grocery shopping or going to church) can sometimes be extremely stressful b/c she doesn't want to be there and can throw extreme tantrums. The toughest part for me is dealing with the "looks" I get from others - the stares of people who lack an appreciation of what we're going through. So I'd ask anyone who reads your articles to stop the next time they see a parent struggling with a child in a public place and just offer support. You may be surprised that by simply asking if the parent or even child needs help - it can difuse the situation. Thanks.

    Posted by Sue April 3, 09 01:51 PM
  1. "...But do I suffer from autism? no. I suffer from people's ignorance, from being constantly misunderstood & rejected becuase I'm 'different', because my priorities in life are different (I want to change the world for the better, I'm obsessd with justice & creativity - I'm NOT interested in socialising & chatting shallow rubbish..."

    If you're not interested in socializing and chatting, then why complain about people rejecting you? I bet that sometimes it's not misunderstanding, it's understanding perfectly well that you don't want to socialize so if a person wants to socialize and chat then he or she should approach someone else instead of trying to socialize and chat with you.

    Posted by Joseph April 3, 09 02:03 PM
  1. I can't tell if this blog is hosted by the Globe or just Boston.com, but either way, I'm pretty appalled that you have allowed someone with zero medical knowledge to post that kids with autism can be "cured" and that "plenty of anecdotal evidence" links vaccines to autism. This is fairly dangerous misinformation, particularly in an era that has seen outbreaks of formerly vanquished infectious diseases. Yes, autism is apparently on the rise and is a terrifying diagnosis (although not to those who post about how glad they are to have it). But let's not scare people into ignoring what every single medical study has said: there is no link between vaccines and autism. Period, full stop.

    Thanks for taking the time to leave a comment, Katekilla, but you have misread the post entirely.

    Nowhere does it say that kids with autism can be "cured," and in my reply to the comment about vaccines I specifically wrote that anecdotal evidence is a.) not from clinical trials and b.) in support of vaccine toxicity in some children, which is *not* the same thing as linking it to autism. My reply goes on to suggest immunizing over a longer period of time, so children can minimize the possiblity of vaccine damage (which the CDC has acknowledged and has even set up an organization to address) and still maximize the immunization benefit.

    Please take a few minutes to reread the post. If you still feel that there is misinformation here, I'd be happy to address it. You don't mention whether you have autism or have a child or family member who does, but I'd be happy to hear about your experience with autism as well.

    To answer your other questions: I'm a Globe staffer, the blog is hosted by Boston.com, which is part of the Globe. Hope this clears things up for you. -- LMA

    Posted by katekilla April 3, 09 02:06 PM
  1. LMA,

    You can respect someone's opinion and be guilty of offering terrible advice. If we know anything about autism's cause it is that it is not caused by vaccines in any way shape or form. Not only is the MMR not correlated with a higher prevalence of autism, thimerosal is not correlated with a higher prevalence of autism. Furthermore, since thimerosal was removed from vaccines in an attempt to maintain the public's confidence in the vaccine program, not only has there been no decrease in autism but the prevalence of autism continues to rise. The US vaccine court, in which the evidence must only amount to 50% and a feather's worth of proof, has clearly stated that there is overwhelming evidence against the vaccine-autism hypotheses. Many young parents, some well educated, were not alive when vaccine preventable diseases led to the death or crippling of so many children. Before the polio vaccine was available nearly 20,000 people a year contracted this disease that kills or cripples a child at a very high rate. Measles hospitalizes 20% of persons who contract it and around 200,000 people a year are blinded by measles according to the WHO. Nonsense spouted by people who insist that vaccines are deadly/unnecessary/should be delayed is backed merely by anecdote but the plural of anecdote is not data. That is why we should pay attention to scientific evidence and not speculation. This type of speculation has led to million of dollars worth of research. If you would like to effectively advocate for persons with autism, you should abandon such notions and support more money for treatment research and services. But you and most parents who hold these beliefs will continue to choose faith over science. The recurrence of the many devasting vaccine-preventable diseases is underway and is fostered by your position and the position of those who choose to believe rather than to critically evaluate.

    BA, thank you for your comment. You'll notice that in the response to the previous comment I talked about vaccine toxicity in some children, not a link between vaccines and autism. I also did not suggest avoiding vaccination, I suggested changing the timeline. Spreading four shots out over the course of 6 weeks rather than getting them all in a single visit does not pose a health risk to the child or to the population in general. -- LMA

    Posted by BA April 3, 09 02:12 PM
  1. The online magazine Slate.com published 2 articles related to this topic this week. I recommended reading them for all those touched by autism spectrum disorders.

    Sydney Spiesel explains why parents believe in autism cures that don't work.
    http://www.slate.com/id/2215076/

    Arthur Allen on how the vaccine/autism theory may be dead, but the treatments live on.
    http://www.slate.com/id/2215128/

    Posted by Samantha April 3, 09 02:23 PM
  1. Suggesting changing the timeline is a bad idea that I lumped together with related positions such as avoding vaccines altogether. You refer to vaccine toxicity for some children rather than others that might lead to autism. There is no solid evidence for this opinion and the costs of delaying vaccination can be great. Rather than providing your own opinion on a topic that involves the well being of the general public, you should consult medical researchers with the proper expertise to offer an opinion. Again, the plural of anecdote or intuition is not data. Try the autism researchers at Children's Hospital next time you cover this topic. Your opinion is no less dangerous than suggesting vaccines be avoided. The reason why vaccines are scheduled as they are is based on research about when a child is susceptible to these potentially deadly childhood diseases.

    As to the interviewee's comments on treatment, there is also no evidence that vitamin supplementation or dietary interventions help. In fact, several clinical trials of the GFCF diet have been delayed because of the negative health impact this diet often has on children leading many participants to pull out of the studies. Only one approach, providing proper and effective educational and clincial treatment to a child, has been found to produce a profound impact on development. Yes, people with autism learn but many need intensive assistance to learn the skills necessary to live fully included and independent lives.

    Thanks, BA. Here's a link to one doctor's take on the vaccine schedule: U.S. News interview with Lawrence D. Rosen, vice chair of the American Academy of Pediatrics's section on complementary and integrative medicine.

    For readers who may be interested in learning more about debate about dietary intervention and autism, AutismWeb.com has some information and links, as does the Autism Research Unit at the University of Sunderland. -- LMA

    Posted by BA April 3, 09 02:50 PM
  1. The author interviews Mika Bradford who despite being an "autism advocate", also works for a nutritional supplement company. So, surprise surprise she says that diet makes a difference. Can you say "conflict of interest and bias". However all the well designed studies refute that diet is helpful. Just like all the anti vaccine crap that's out there. Ms. Bradford believes vaccines contribute to autism based on her website, however that has been proven false so many times that it makes me sick.

    Posted by MattyB April 3, 09 03:40 PM
  1. "plenty of anecdotal evidence"=stories from people who probably have no clue what is really going on. How can you can have "anecdotal evidence" of vaccine toxicity? Either you have a clinical diagnosis of a side effect from a vaccine, or you have baloney.

    So, if your child eats, say, shellfish, and gets hives an hour later, you'd require a clinical diagnosis to think that maybe she has an allergy and that it was possibly caused by shellfish? -- LMA

    Posted by Moopheus April 3, 09 04:26 PM
  1. Also, what about the challenges parents who have ASD may face when they have children who turn out to not have ASD? http://www.aspiesforfreedom.com/showthread.php?tid=12544&page=4 has some interesting comments on that. It includes this bit:

    a) someone talking about his teen son who has more street smarts than high test scores
    b) someone else consoling him with the reminder that success takes networking, social skills, and luck too
    c) a third person basically asking "why do you want a child like that? if you don't have people skills you can go into the professions instead" [hold it, how many of us want a doctor, lawyer, teacher or nurse without people skills?]

    and lots of other issues (and lots of other children!) get addressed in the thread too.

    Posted by Joseph April 3, 09 06:28 PM
  1. Thank you for sharing your experiences. I hope you will continue to do so. You've obviously hit a nerve with the pro vaccine crowd. I also read one of the Slate articles - there was too much generalization for me to read it as a credible. As with food allergies, the issue of mercury toxicity (or any toxicity) is individual. A member of my family had suffered for years with mercury toxicity, which was later effectively treated by integrative medicine. I am not anti-vaccine, but have adopted a slow and cautious approach with immunization due to family history. Every story and experience helps many of us piece together what might be applicable to our personal situation since traditional medicine hasn't yet produced an autism cure.

    Posted by tortoise April 3, 09 07:06 PM
  1. "You must pace yourself to prevent burn out and, regardless of your financial resources, know that you can positively impact your child's life."

    Also, what about grandchildren? For example, what if your child grows up to be an adult who copes well with a steady routine and lots of quiet, falls in love with someone else like that, they have a baby, but the baby cries loudly at unpredictable times instead of understanding their need to avoid sensory overload? All parents need support, whether they have any kind of ASD or not! I just don't know if the pacing you're talking about includes grandparenting or if there's non-grandparent support available for this or what.

    Posted by Joseph April 3, 09 08:27 PM
  1. Your comments linking to other sources supporting dietary interventions and, I'm not sure what, are completely bogus. The University of Sunderland link goes to a group that has 0 peer reviewed publications that I can find on PubMed and then the associated publications page listed talks, not peer reviewed information:

    Research & papers
    A gluten- and casein-free diet as an intervention for ASD (Powerpoint) handouts (PDF)
    Presentation at the National Autistic Society conference September 2008.

    Autism as a metabolic disorder | Gut permeability and autism
    Information about the metabolic model of autism to which we subscribe to (Updated).

    The Sunderland Protocol: A logical sequence of interventions
    Step-by-step information on various biomedical interventions for autism (Updated).

    Unorthodox interventions for autism | Diet & autism (1) | Diet & autism (2)
    Gluten- and casein-free dietary intervention for autism.

    Immune system in PDD (PDF)
    The potential relevance of the immune system to PDD.

    Pharmacotherapy (1) | Pharmacotherapy (2) | Pharmacotherapy (3)

    Use of medication for PDD (PDF)
    Details of medications used to manage autism.

    The incidence of autism | The demographics of autism in the UK
    The changing numbers of people with autism.

    Environmental factors in autism | Biomedical factors | Autism & vaccination
    The potential role of environment to autism.

    Molecular modelling of peptides | Peptides & executive functions
    The potential role of peptides to autism.

    Gulf-war syndrome | Overlapping syndromes
    Collected articles on fatigue-related syndromes.

    No supporting publications but speculation. Are you in the pocket of complementary and alternative interventions? I'm sure you and other vaccine questioners feel everyone that does not accept the mommy instinct is in the pocket of BigPharma. Why would you refer to people doing no research of note on autism in the UK when there are many researcher here in Boston that are among the most respected names in autism research. The link to the AAP representative of quackery, I mean alternative and complementary medicine, why not ask a doctor that practices medicine. Modern medical science has only been associated with continually increasing life spans, cures for cancers that once killed and the general improvement of public health. No, it would be better to trust a doctor that thinks energy healing is superior to chemotherapy. We know just how effective those "traditional" approaches to medicine were because people lived so much longer back in ancient times. Again, consult the medical experts here in Boston that deal with autism every day rather than searching to confirm your soft thinking.

    BA, again, thank you for taking the time to comment, though really, there is no need to be insulting or condescending.

    The point of this post wasn't to argue about vaccinations, or risks to herd immunity, or what causes autism, or why one type of therapy is better or worse than any other. It was to generate discussion about ASD and parenting issues.

    For the record, I never said that dietary intervention is the best, or only treatment -- though I must have misread your comment, as I thought you were asking me to provide more info about it. There are many, different types of therapies out there, and for some people a combination of therapies works best for their child -- different children respond to different therapies in different ways.

    Some of the best autism researchers out there explore some of the theories that you call "soft headed" (Dr. Tim Buie, a pediatric gastroenterologist at Mass General, is one of them -- my son has been his patient for some time -- but in spite of his credentials, based on your comments it seems that you'd probably discount his work with Harvard University and Mass General, given that it's in a field that you seem to think is irrelevant quackery (i.e., not ABA). I'd direct you to the NECC website and the great work they're doing with ABA and some local public schools, but I can see that you are already very familiar with it. Applied Behavior Analysis works wonders for many people, but not everyone can afford to send their child to a specialized school or get the proper training to do ABA on their own. Sometimes there are underlying problems that complicate the autism issues. Some parents feel that an alternate or additional type of intervention is necessary or is helping their child. There's nothing wrong with that. -- LMA


    Posted by BA April 3, 09 09:05 PM
  1. I'm not going to tell parents how to treat their children or to discern who is and is not an expert here, but would just add that professionals who study autistic spectrum disorders need to take a multi-disciplinary approach to figuring out what causes autism and how to help those that have it. For example, when I was growing up in the 70s and 80s, the issues of children with AS were considered something that a child would grow out of. Now, similar children are being viewed as "disabled". The children currently labeled as "disabled" were no biologically different from myself or other AS adults who earned degrees, married, took jobs, and lived near normal lives. I never had fits but had the communication and loner-type behaviors associated with AS. Why was that okay in my childhood but not now. This is a question for sociologists.
    I would echo what some other of the adults with AS have said. I would NEVER want to be "cured" because that would mean getting rid of me. As a musician, I need to be slightly autistic to get ahead. It would help if employers were more accepting of AS adults . The discrimination has cost me so much in terms of salary and job skills, yet I was graduated with a B.S. degree in Government from Suffolk University, cum laude. I've been fired many times for reasons I don't understand. I hope kids with kids with AS today get that chance at a normal education but if parents and school systems label them as disabled, I'm afraid they will not.

    Posted by Stephanie April 3, 09 09:33 PM
  1. Thank You for the article. My 10 year old son was diagnosed at 3.5 years as having PDD-NOS. Our pediatrician in PA brushed off his developmental lag. Our pediatrician in MA knew that there was something wrong.He still greatly struggles with speech and social interaction. In the course of our journey my wife and I have met many parents and children that have the diagnoses and whose abilities vary widely. Our son is in a special education program that stresses Applied Behavior Analysis (ABA) and we have seen some improvement. I urge all parents that have an issue with their child to get a diagnosis- Get them into early intervention, and if necessary get an Advocate to help you get as many services for your child as are needed. It is critical.

    Thanks for commenting, Curt! It's wonderful that you were able to get your son into an ABA program that's helping him. And thank goodness for your ped in MA who didn't brush off the developmental lag... -- LMA

    Posted by Curt April 3, 09 10:11 PM
  1. As someone with Aspergers, I find the vaccine causes autism argument to be idiotic. The evidence just isn't there. In my family its quite clear that there has been a lot of aspergers in the family tree, way previous to vaccines. Genetics? Clearly. Occam's razor people.

    Aspergers is a strength as well as a weakness. I am insulted by having it classed as a disability. The trick is to go into one of the fields where being hyperrational is a benefit, not those in which interpersonal weakness is a handicap. Sort of like a short person avoiding the NBA. Which is not quite the same as a handicap.

    An ex-girlfriend of mine was clearly dyslexic. She was always very grateful that she'd never been officially diagnosed and tracked, because as a "dyslexic" kid it would have been considered an achievement for her to go to college. As someone for whom the world had high expectations, she became a doctor and a prof. at Harvard Med School. Expectations and labels matter. Sure, more services are nice, but not always a long term favor.

    The Aspergers debate is skewed because it is always the low functioning, troubled people with Aspergers who are discussed - not the happy successful ones. Classic selection bias. The first group certainly exists, but so does the latter.

    Excellent points, Anon! Thank you for weighing in! -- LMA

    Posted by Anon April 4, 09 12:11 AM
  1. I believe that Scientology has developed a special learning technology that is highly effective for children diagnosed with autism.

    Posted by Ann Matranga April 4, 09 02:18 AM
  1. As a parent of an Aspergers child I related deeply to your article. We experience the entire spectrum of behaviors, pain, sadness and victories and have been fortunate enough to have caring, knowledgeable medical and educational professionals at key points in our son's life. My son has two siblings who live through his autism as well. As a family we endure my son's disabilities and rejoice at his victories. It is so important to emphasize that there is Hope!! My son is just finishing his freshman year at college and though we know there are challenges to come, we know there is Hope!

    Posted by quovadis April 4, 09 06:58 AM
  1. I am an Aspie adult, with an Autistic daughter and an Aspie father. First, my daughter was diagnosed - age 7, then I was diagnosed - age 30, my father has yet to be diagnosed but shares traits with my daughter and I.

    I just want to say that many of the different perspectives on autism are true, or partially true, at the same time. It's true that it's difficult to raise my daughter - also true that she's beautiful and gifted - also true that it's OFTEN other people's reactions to her that are what's difficult about helping her navigate through the world, at the same time it's true that other people's reactions to her have been supportive and helpful. She dreams of going to a small school that teachs her what she actually wants to know and has NO gymnasium! (No school like that in our area.) Me - I work full time, have a bachelor's degree, am working on my master's, am rasing my daughter and son and find time to spend one on one with both of them - I didn't need any "special" help getting through school, work or college - I just got my diagnosis to understand myself better. I do have a terrible time making friends, because I can't tell when people love me unless they say so - but the four friends I have now are all the more appreciated because of the struggles and lonliness I went through before finding them - they are precious. My dad - he's 55 years old and so much like me. He's great at research, of topics others around him can't figure out - he talks about his topics constantly and doesn't look people in the eye, classic Aspie traits. I've known adults in their 80's who seemed just like us - very Asperger - but were not diagnosed (yet very successful.) A trait that seems to be very Aspie is the desire to succeed and simply not stopping movement toward goals even in difficult situations, very high standards for self, perfectionism. I know "low functioning" folks too, who can do things higher functioning or neurotypical folks can't - like one young man who can always see three rainbows, when most people can only see one.

    It's my opinion that it's genetic, not caused by harm - because I have a father and daughter both on the spectrum along with me, we got more than my daddy's green eyes! I feel there were Aspie-folk in my family many generations back, like my grandpa who could count bricks by looking at a wall. I don't feel it needs cured, absolutely not! I do feel we as a society should focus on helping EACH INDIVIDUAL HUMAN (autism spectrum or not) reach their poteitial as a person. I don't feel we should worry too much that different people have different skills, because put together, we as a society survive and thrive because of all our different abilities and perspectives. I feel that it would be impossible to separate my Aspie traits from me, same with dad, same with my girl. :)

    Posted by jen April 4, 09 11:45 AM

  1. Dear Readers and Lylah,

    WOW! What a great assortment of thoughts and ideas regarding autism spectrum disorders! I think I will jump right in and put a few thoughts on the table. The controversies that surround our families and the course of action we each choose in order to improve our children's quality of life will continue for years to come.

    First, I do not believe all cases of autism are prompted by vaccine reactions. I absolutely believe that genetics plays a role, how could it not? In my opinion, genetics can never be removed as a factor from the equations dealing with conditions of the body. There is a difference in a factor being a variable verses the catalyst that initiates the series of events. My circle of friends and families within the autism community consistently reference the saying "The apple doesn't fall far from the tree." In my family I would be that tree, since I tend to over analyze situations, can be a bit OCD in having things in order and am very literal.

    In the circumstance regarding my son, my family has documentation of actual adverse reactions noted in our pediatrician's records one year prior to my son's diagnosis and my family ever hearing the word autism. If I were to have said my child had a reaction to a sulfa drug and it resulted in a rash there would be no controversy. Yet I say my son had a reaction to his vaccination and had breathing striders within 24 hrs needing ventilator in order to breathe and I am no longer viewed as an educated parent but variable that challenges conventional status quos.

    Vaccines absolutely have a purpose and place in society but the act of vaccinating does not go without risk. If that were the case there would be no need for parents to sign an acknowledgment of the minor and major reactions that can occur which do include a variety of manifestations including effects on the nervous and immune system as well as death. Information provided by the manufacturers with each vial describes this in great detail. With that being said, our own government recognizes these real risks associated with vaccines which prompted the creation of the Vaccine Injury Compensation Program for circumstances of this nature.

    The Increase in autism: In my humble opinion, the debate over whether the increase in autism diagnoses is real or just better diagnosing is now typically debated by individuals who do not work in the disciplines that serve individuals with autism. Bring a group of educators, physicians, BCBA's together and ask them if fifteen years ago they had the same number of children with these unique profiles and behaviors and I can promise you there will be a resounding "NO." It is openly acknowledged by our government and state agencies that autism diagnoses have continued to increase.

    I do respectfully acknowledge there are adults who are now being diagnosed with autism and that each of you is valued as a person and individual. The contrast I made previously is that the autism of today is that of children who have severe communication delays, an increase in maladaptive behaviors, and lack self help skills in areas as simple as taking their clothes off or independently using the restroom. I love my child and the children I work with beyond words but I want these individuals to have every opportunity at living a joyful life unlike what many live by being trapped in a world where their simplest of needs cannot be expressed or conveyed.

    States like California have data showing that the increase in autism has been significant and disproportioned to the increase in other diagnoses and disabilities. The need for programs through state health and human services as well as public education systems across the country continues to increase. These children would in no way pass as "quirky" unless your definition of quirky is squealing, making loud noises, randomly repeating words, being 10 and not yet toilet trained, taking your clothes off at any given moment, touching every thing you see and putting non-food items in your mouth, oh and did I mention not being able to communicate?

    While I do work for a company that manufactures nutritional supplements, I provide technical support on the role of vitamins and minerals. As a parent who has had her child on a "special diet" for over eleven years, has been divorced and at times worked two jobs to meet the therapy, educational and medical needs of her child, I am the last person to take lightly the suggestions I provide any consumer. To imply that my professional position does anything other than positively impact my desire to see families succeed in taking on the difficult challenges in changing the foods their children eat and find ways to provide nutritional supplements or medications is insulting. Professionally I make suggestions based on individual's dietary needs, physical manifestations and physician's diagnosis or recommendations. Nutritional deficiencies and the need for dietary exclusions or modifications are associated with many medical conditions.

    I never use the word "cured," however I have had the opportunity to see and work with children whom appear to have "recovered" from the symptoms of autism. Analytically this should not be such a point of controversy since autism is now viewed as a neurobiological condition. If three different people each experienced the same exact injuries from an auto accident and received the same medical and therapeutic supports, we would all agree that the outcome would look very different for each person. This would all depend on their state of health at the onset of the injury as well as their genetics and how their body heals and at what rate. It would also hinge on their life style and what positive and negative behaviors were embedded in their daily lives. A person, who runs, drinks plenty of water, doesn't smoke or drink, eats the appropriate amount of fruits and veggies, will respond differently than a sedentary individual who eats excessive amounts of fats and sugars, drinks excessively and smokes.

    Bottom line, autism is no longer viewed as a disorder of the brain alone but a condition with many facets. I believe in treating the whole child which means addressing all issues with a multidisciplinary team approach. For my family this has included a Family MD, Gastroenterologist, ENT, Speech therapist, OT, Board Certified Behavior Analyst, Nutritionist. Our children are too complex to assume that one and only one area of need should be addressed.

    As for families whose children are indistinguishable, I congratulate them whole heartedly and rejoice in the triumph of their child having a full life. It amazes me that as a community for those of us who continue to face the challenges of autism cannot be supportive of those whose lives have improved so much so that the complications of autism no longer impair every aspect of daily living.

    I find it interesting that many professionals from various disciplines will be the first to say our children can improve but -- what they are really saying is "their way is the only way to help your child." Take away the label of autism and I see children who have bowel issues which include ongoing diarrhea, bowel with-holding and impaction that require a KUB (kidney, urinary, bladder x-ray) in order to determine if there is a blockage. I have children whose diet consist of 4-6 foods, are failure to thrive and have difficulty in gaining weight. I see children whose skin is so dry and ridden with eczema that leads to bacterial and fungal infections, children who sleep at the most 2 hours at a time only to wake up screaming in the middle of the night only to resist the consoling of the parent. These are just a few of the challenges our children face and with great respect I with any other analytical professional would recognize that these complications should be addressed and would impact the child's quality of life, well being and ability to learn.

    My message, as parents and professionals who are responsible for the overall well being and care of these children, we must NEVER let the label of autism over shadow the physical, medical and nutritional needs they present with. We must address and support the needs of each individual and their family, whatever they may be. May autism awareness month bring each of you hope and the encouragement you need to face your unique circumstances while improving your loved ones quality of life!

    If you still don't have the answers you need or the information you want? For more thoughts on anything autism visit my blog at www.autismspot.com

    Sincerely Yours,

    Mika Bradford

    Posted by Mika Bradford April 4, 09 03:18 PM
  1. Spreading out childhood vaccines may not affect whether children are properly immunized...presuming that they get all the shots they should have. However, it does require that children have many more total injections. This equates to more total pain for the child (greater number of shots), more chance for injection site related infections (by splitting combo vaccines), higher cost (more doctor visits which you will have to pay for), and more chance for medial error. This last point is important and often underestimated. While no knock on the medical industry, every interaction you have with a physician has a possible negative outcome. Maybe you get the wrong shot, or one too many. Maybe you catch a cold at the office. The task is therefore to minimize the number of visits you have while maximizing the the benefit from those visits.

    If the perceived (and unproven) advantages of spreading out vaccination outweigh the known multitude of disadvantages, then go for it. However, keep in mind that there are risks to this approach as well.

    Posted by bv April 4, 09 04:07 PM
  1. I don't know about anyone else, but I found the views of "Generation Rescue" to be absurd junk science. A spokesperson was on Larry King last night. The causes of autism cannot be reduced to coincidence and the real scientists understand the laws of cause and effect. Professionals do not agree amongst themselves, and the last thing any of need are non-professionals telling autistic people there is something wrong with them. So, that's just a warning to parents to not listen to this organization. There is something wrong with the parents who are wondering what is wrong with their child.
    To jen, the author of the post above, well said! You all sound like a wonderful family. :)

    Posted by Stephanie April 4, 09 04:25 PM
  1. I have worked as a behavior specialist (implementing ABA under a BCBA) for a year. I have done a LOT of research on Autism and the full body effect of autism on children. I am a strong believer that there are genetic factors in autism. I know of a family with 6 biological children who all have autism. I also believe that there is some pre-disposition to autism that, when triggered by something environmental, can cause autism. Be it a vaccination (which i agree there is not enough proof of, and they took away the thimerasol and the autism rate is STILL 1:150), or some other factor.

    Posted by M. April 4, 09 07:16 PM
  1. This was an fairly informative article, without too much a slant on things. Being a special educator with training and focus on teaching those on the autism spectrum, it's important for all of those people who suspect that a child may be on the spectrum... get a neuropsychological evaluation. Primary care doctors can make the referral. This is the best way for your child to get the diagnosis they need, which will lead to the proper education placement and outcomes.

    I think that it's important to note that going gluten & casein free benefits those who have food allergies and is not infact a "cure" for autism. Please take careful medical advice before trying your children on this diet, instead of the writings of anyone with a blog on the internet, as it's difficult to uphold at both and school.

    Best of luck.

    Posted by Stellar_D April 4, 09 07:22 PM
  1. "So, if your child eats, say, shellfish, and gets hives an hour later, you'd require a clinical diagnosis to think that maybe she has an allergy and that it was possibly caused by shellfish? -- LMA "

    If we're going to use analogies, we need to make sure we're comparing apples to apples. Let's correct your analogy by adding the following 3 background facts to your hypothetical:

    1) After countless studies, no such thing as a shellfish allergy has ever been discovered. The heads of the CDC and every other reputable medical organization says there is no such thing as a seafood allergy.

    2) Some random Hollywood celebrity says that seafood allergies are real.

    3) Eating seafood prevents you from getting lots of very serious diseases.

    Posted by SportsAuthority April 4, 09 07:41 PM
  1. This statement from your article is incorrect:

    "There are so many disorders that fall on the Autistic Spectrum -- Asperger's, ADD, SID, PDD-NOS, just to name a few."

    First of all, it is the autism spectrum. Second, ADD and SID are not spectrum disorders. (And SID is no longer called that, it is SPD). Third, there are 3 autism spectrum disorders, Asperger's, PDD-NOS, and Autistic Disorder, which are also Pervasive Developmental Disorders. The other two PDDs are Rett Syndrome and Childhood Disintegrative Disoerder. Please check the DSM-IV.

    Thank you, barbsboy! -- LMA

    Posted by barbsboy April 4, 09 09:37 PM
  1. Thank you for this article, and for all the postings above. As a parent, the one thing that has been MOST off-putting is the "tap-dancing" that so many professionals do - from the schools to the physicians. Very few people will call it what it is - AUTISM. So many still believe - erroneously - that this condition is a "death sentence" for the individual... that there's nothing that can be done. In our own case, we lost a year because no one would really "name the beast." We'd ask, and they'd just say "Well, we're not really sure..." The pediatrician was in complete denial, and the school - who was providing just amazing services to our son - was being concerned about overstepping their bounds by making a "diagnosis" when they are not medical professionals. There is hope - we worked for over a year with the school district before we found and began working with a DAN! practioner, and in just one year, have seen our son progress far beyond anyone's expectations! We are using a variety of nutritional (vitamin/mineral) therapies, after treating severe intestinal and yeast infections, and are now using a homeopathic approach to detoxify the heavy metals from his system. Our son is improving. He is closing the gap on many many levels. There is hope, but it is time and labor intensive. I cannot work full time as I need ot manage his GFCF diet, all his supplementation, and oversee the use of "the listening program," which is VERY regimented. All that said, it is worth it. To see him actually engage with his peers, to play and have fun with his sister, to WANT to see family and friends - it just means the world to us. We'll happily tough it out for the next few years to give him the chance to have a successful life. We understand that "success" for our son may NOT be the same as "success" for a NT kid, but whatever it looks like, we will be supportive and proud of him.


    Posted by Laurie Wagner April 4, 09 09:39 PM
  1. My 14-year old son was diagnosed with P.D.D., N.O.S., bipolar and a severely compromised cognitive profile at age 6-years of age. I thought my life was over. At that time he was my only child so I poured every ounce of energy into trying to "cure" him. I got mixed messages along the way. Professionals gave him different diagnoses and would argue with me or be rude if I agreed with one professional over another. When my son was a toddler and undiagnosed, he would have these horrible tantrums and people would stare at me like I was the worse mother in the world. After he was 2 other mothers refused to have play-dates with me because he was so unpredictable. I tried to have him diagnosed when he was 4 and took him to some of the biggest names in the Boston
    autism community. Unfortunately, we were about 5 years ahead of the trend. People were mixed about the effects of A.B.A. My son is very social so some professionals told me that he couldn't be on the spectrum because he remembered people's names and how he knew them. Then there were the ongoing tantrums. Mood disorders just weren't diagnosed with much frequency when my son was little. He does have major allergies but food is one of the few the few joys hegets in life.

    I don't regret all the hard work that went into trying to get him treatment.
    I also don't blame vaccines or diet. All children and families are different and we must respect our different approaches. My son went into a residential program at 10-years of age because we were afraid he would hurt either himself or his very fragile 4-year old sister (she was a former 24-week premie.) It has been through the expertise and medical team of all the different people who currently live and work with my son that he has found some peace and a childhood. My hope is that he will reach whatever his maximum potential is and feel good about himself and his life. He will never be "cured" .Some children do recover. He was never going to be one of them. The happiness and acceptance that he has found in residential life brings me great joy and hope for his future.


    S.My son

    Posted by S.F. April 4, 09 10:45 PM
  1. I can't tell you how many people come to my blog with that same question.
    Best wishes

    Posted by Whitterer on autism at wordpress April 5, 09 12:16 AM
  1. I would be very careful with a diagnosis of autism. Our medical system is such that doctors and insurance companies gain if we can all be diagnosed with some condition that requires ongoing care. Obviously the whole medical establishment earns more if they can have us all on meds, and at appointments I now live in Texas where the number of children diagnosed with asthma is absolutely astounding. Most of them are on inhalers which they need to keep stocked, and they have regular medical appointments, all activities which keep doctors very busy and wealthy. Just be careful, though not neglectful. www.dimequecrees.com

    Posted by Ana April 5, 09 10:53 AM
  1. The idiocy over a link between childhood vaccinations and autism led to a dangerous and potentially fatal outbreak of measels in Chicago several years ago. Enough parents had failed to immunize their children to cause a localized outbreak, and children who were too young to be immunized were put at serious risk. It's about time that this preposterous claim with no scientific evidence be put to rest before it creates a significant healthrisk. http://www.sciencebasedmedicine.org/?p=384

    Thanks for the link, Colin. -- LMA

    Posted by Colin Principe April 5, 09 03:49 PM
  1. Thank you so much for this post, Lylah. Sorry that some people have been mean with their comments. What you are doing is wonderful. My 13 year old step-son was also diagnosed with Asperger's at age 5. I just wanted to share how important early diagnosis is. When he came into my life at age 4 (his mom is not in the picture), I totally knew there was something wrong. At first, his dad thought I was crazy, he was almost insulted. "But he is so brilliant" (he is), "but he is so loving" (he is), etc.... But I persisted and we took him to a great hospital in Belmont and he was diagnosed. I felt like the evil step-mom for a while but that didn't last long - with every day he grew older, it became more apparent. It took many years and a lot of work to get the public school system to put in place a great team that helps him navigate and really "gets" him, but I am happy to say that he is really thriving this year. I agree with all the Aspies posting here, that it in many ways should be considered an ability rather than a disability :) Certainly he can be frustrating at times, but I would not change a thing about him.

    Posted by citykitty617 April 6, 09 01:12 AM
  1. Thank you for writing this article. The information is great! As for the naysayers and people who say that vaccines are fantastic and never injure a child, the GFCF diet and biomedical is all bunk, do whatever you want to do with your child; that's your right. But don't you dare discourage people from sharing information on what has worked for them. I thank God that people have shared that information. My two year old is benefiting dramatically from the GFCF diet (including the removal of other identified intolerances) and biomedical treatments. The reality is, everyone has seen the change in her. There is no denying this approach works for some kids.

    Posted by Crystal April 7, 09 01:00 PM
  1. As the oldest sibling of an adult brother (age 46) with severe autism, I can assure you the adults are out there. The difference is that when my brother was little, they estimated the incidence of autism to be 1/10,000. Now in just 40 years, it's 1/150. The problem is that all the attention now seems to be going for children. That's needed. But the adult autism needs for those with aging parents are huge. The planning for those families MUST start now. How to start? Go to http://www.talk-early-talk-often.com/autism-social-skills.html

    Posted by Dale Susan Edmonds April 18, 09 08:23 AM
  1. Go to YOU TUBE AND type in "autism and self injury" or "autism seizures" for a raw look at severe autism. Also, there's a video called, "autism spectrum seems out of control" on youtube that's good.

    Posted by becky February 12, 10 08:33 PM
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About the author

Barbara F. Meltz is a freelance writer, parenting consultant, and author of "Put Yourself in Their Shoes: Understanding How Your Children See the World." She won several awards for her weekly "Child Caring" column in the Globe, including the 2008 American Psychological Association Print Excellence award. Barbara is available as a speaker for parent groups.

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