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Newly Diagnosed ASD

  1. You have chosen to ignore posts from wasMM379. Show wasMM379's posts

    Newly Diagnosed ASD

    Hi Everyone!
    I have been a long-time member (but can't sign into my original account MM379).  I don't get to post too often, but do keep up on all the posts.  I have really enjoyed this forum and all the great advice. 

    My 4 yo DS just got diagnosed on the autism spectrum - high functioning PDD-NOS.  We aren't shocked, but also thought it might be more of a sensory integration issue as he does have a reasonable amount of social skills (has friends, can play interactively, shows empathy) although admittedly, those aren't consistent all the time and seem a little less developed than his same-age peers.  He does have a fair amount of sensory processing issues and some expressive language difficulty, so we have begun speech and OT at a reputable specialty agency in our area.  We went through one round of evaluations (minimal) with our public school system when our concerns started as DS was too old for EI (hit all his milestones before age 3, no major concerns before 3 except for poor sleep and hyperactivity, but now in hindsight, I do see a few more subtle ones).  The public school didn't evaluatate on all fronts (only speech/cognitive, no psych or OT) and my pedi redirected us to other specialists.  It has been a long process but now that we have a dx we are regrouping with our public schools. 

    My concerns are many.  My self-funded employer insurance does not cover autism treatment like speech, aba therapy, etc.  Right now, we are paying out of pocket for speech and somehow managed to get OT covered b/c of some of the physical aspects.  He is in full-time private pre-school (childcare center based) that we love, he does have some friends, and his teachers have been willing to be creative and try anything the OTs suggest in terms of his sensory needs, which we have already seen slight progress around in terms of his concentration, hyperactivity, etc.  He will be pre-school age for another year.  My dilemma is we are in a small town that only has a part-time preschool program to deliver special ed to this age group.  And, our IEP meeting is in two weeks, they may order more evaluations, and the summer does not "count" toward timeframe allowances they have for response.  So, he may not be involved in services with them until the fall (?).  Not sure yet.  I am very torn.  I don't want to pull him out of his pre-school completely b/c it has been a source of consistency and friendship, but I also feel like people think we are crazy to question "free pre-school" with the therapies included, when they don't understand it would be a major transition for him PLUS it is not full-day, so he would then have to be shipped off to a sitter or another childcare center midday.  DH and I have pretty hectic full-time careers.  I know his dx would likely qualify him for transportation, but i don't know if that could be to his current pre-school (different town) and frankly the idea of someone driving him who is a stranger (as a little guy at 4) makes me ill.  Obviously we still have a lot to figure out and need to examine our own lifestyles, jobs, and what would be the best for DS.  We aren't opposed to privately paying for some services for this next year either in lieu of or in conjunction with the public school services, and then when he is kindergarten ready definitely going full swing with the public school services.  We even spoke with a great ABA therapist who is willing to go to our current preschool (and they are willing to allow her in).  But again, this would be private pay.  Also, my understanding is thatt while there are many awesome OTs in the public school system, not all have sensory processing disorder certification, so we may want to supplement his therapies at the speciality agency regardless for quite some time.  I am currently appealing the insurance coverage through my employer.  DH's open enrollment passed recently, but before we knew all this, and his is self-funded as well... not sure about the coverage but can look into it.  Switching employers, one of us taking a step back, moving, have all been on the table... just need to not make any rash decisions until we know a little more.  It is hard though - his diagnosis has been called "fluid" with a good prognosis if interventions are started early at this ripe developmental age, so we certainly feel an anxiety to get more of the ball rolling here. 

    Just wanted to put all this out there and see if there are any similar situations in the forum community and if anyone has any insight to share.  I have done my google duty and I have been feverishly combing the various ASD support websites, but did want to put this out for feedback, advice, guidance, on this forum since it has been so helpful in the past. 

  2. You have chosen to ignore posts from Micromom. Show Micromom's posts

    Re: Newly Diagnosed ASD

    While I don't have experience with this particular area, I do have some experience in the area of EI intervention.  So I'll just share a few things I've learned.  

    It sounds like you've made a lot of good progress, and you're smart to take time and make thoughtful decisions.  It's a "fluid" situation on a lot of levels, so take the time you need to process everything.

    I know it can be a controversial decision, but I agree with your thinking about keeping your son in his current preschool, especially if they're not only willing to allow the ABA therapist in, but willing to also implement some new procedures to support him.  They sound like a wonderful resource, and that support and consistency can be good for both you and your son as you figure out next steps.  The money you save on the "free preschool" may be spent on sitters and stress instead, not a good trade off.

    As you seek out information, look for opportunities to build a community for yourselves.  See if any organizations have a mentoring program that might match you with people with a similar diagnosis.  I found talking to someone "who has been there" to be much more helpful than books and google.  They can give you really personal insights, and ideas.  The internet can be overwhelming, and negative, look for local resources that might have a more positive, personal touch. Children's Hospital has been a good source of information and references for us.

    My experince with Early Intervention taught me that all therapists are created equal.  We had some good, and some bad.  You know your child best, and if you think something isn't working out, don't be afraid to speak up.  It can be intimidating to question the "experts," but remember, you're the expert in your kid.  

    And this is just my personal advice, but something I took too long to realize is that just because something is different than you imagined it would be, doesn't make it bad necessarily.  Looking at things through a new lens is an adjustment, but it also lets you see some bright spots that you might have otherwise missed.  You'll have a special appreciation for some things, take those in too, along with everything else.

    I'm sorry, I don't have information more specific to your situation, but I wanted to pass along some support and encouragement.  You'll find your way through it all, in small steps.  

  3. You have chosen to ignore posts from stefani2. Show stefani2's posts

    Re: Newly Diagnosed ASD

    MM - not sure if you're still reading this post, and i don't really have anything to offer but i'm wondering if you can tell me what types of "signs" you now see retrospectively that point to ASD?  also where/how was your son diagnosed?  i have some concerns over my DS and wondered about your experience. 

  4. You have chosen to ignore posts from purplecow89. Show purplecow89's posts

    Re: Newly Diagnosed ASD

    Having watched several of my friends' kids who were diagnosed...

    The biggest things were:

    Language delay.  In one case, hard to pick up on because he spoke, but 90 percent of what he said was repeating things not conversation so he sounded more verbal than he was.  Reciting the Thomas the Train song while pushing the train...but not saying anything about the train or telling a story about what he was doing with it, even if other kids were playing too.  Was a whiz at the speak and spell, but had very little working vocabulary.  Does the child know a question when they hear one and can they answer?

    Not acting like he could tell what was going on--having to be told where he was and why he was there (Look, we're here to play with Janey)

    Being very upset about things when nobody could tell what was wrong--obviously something was amiss from his perspective.  Usually it turned out to be something not done the same way as last time or wasn't set up the same way.

  5. You have chosen to ignore posts from stefani2. Show stefani2's posts

    Re: Newly Diagnosed ASD

    purple - thanks!  we have an appt. with the lurie center in a few weeks just to be checked out.  i'm nervous that they will diagnose us with SOMETHING just b/c we show up.  but i suppose better to have all the info now.

  6. You have chosen to ignore posts from wasMM379. Show wasMM379's posts

    Re: Newly Diagnosed ASD

    For my son, there are days you don't see any signs at all, days you see a few and question "Is that just developmental?" and days he is textbook.  What threw us for a while is that he IS social - empathy, has friends, loves playing w/ friends and family.  But in novel situations, he struggled to interact and we noticed how he interacted in familiar situations was different than his peers.  At daycare/preschool, lots of his friends would come up and tell me about there day, what they did over the weekend.  DS has all the same vocabulary, but his ability to use it isn't always there.  If asked about his day, he'd use vague descriptors to get out of talking (no one, nothing, everything, we played) but it wasn't just stubbornness... with prompts he could give more info once you triggered the words/language for him.  He has issues with word retrieval.  He interacts with his friends more through gross motor physical playing activities and silly language than actual conversations at an age where his peers are using language to interact more.  He never asked "why" questions when like-aged peers were .  On the positive, his use of language is improving greatly with therapies and he is asking why questions now.  He does still struggle wtih word retrieval and may always, but SLP is teaching him ways of making associations so he gets his point across.  Can't think of cheesestick?  Don't point at the fridge and have a tantrum... Say "I would like the yellow long thing in the little package in the fridge"  b/c his brain can connect other ways of explaining it without the exact word.  My son didn't have a ton of signs before age 3 (when the lack of expressive language was not as noticeably different as his peers) which is why we missed the EI boat.  In retrospect, the lack of Why questions and lack of expressive language (which he was my first, so I thought "great vocab" but didn't realize until later that he wasn't USING it), he would dart without awareness of safety risks, was a terrible sleeper, liked routine/order, and was a memorizer were all likely signs, but they weren't all the time or super obvious.  There are days it is more obvious: walking in circles, toe walking, when the behavioral therapist came to observe him, all his little cars were lined up in meticulous order, and he is rigid about that.  BUT, he also does play with them with imagination like a neurotypical kid, it is just on his terms as to when/how.  He might turn a truck over and look at the spinning wheel, but he'd also then play with the truck.  He does a lot of sideways looking at things - plays with his cars lying on his side.  I have gotten slightly different explanations from OT vs. neurologist, but both basically have to do with providing more stimulation of his visual field.  Gross motor has always been good/advanced, but fine motor such as dressing himself, wiping, how he holds a crayon, are behind.  He struggles a bit with motor planning to figure out what steps in what order he needs to take to get his shirt or shorts on, hence getting discouraged and giving up.  He has selective hearing and doesn't always respond to his name.  Sometimes his little "motor" is running on high speed and you can't slow him down.  Fidgeting at school and not being able to sit for circle or activities at the same rate as his peers was very noticeable, rough play and hugging also were noted, suggesting a sensory issue.  He would become very hyperactive/agitated in group singing situations (hit face, run into walls).  OT did diagnose sensory processing issues and we saw RAPID improvement in hyperactivity just from a few strategies right away, such as letting him bounce on a hoppy ball at school, giving him "sensory breaks" for more intense physical activity, using a dial that gives him language for "how fast is your motor running" and he can label and think of ways to make it "just right."  Letting him see a visual schedule and mark off activities helps great with transitions and flexibility - even if just verbally in the morning I remind him: first you and your sis will be in the gym playroom while mommy exersises, then snack, then we can go to the playground.   I will tell you, our providers are not 100% sure it is ASD yet.  He is young enough that they feel some of these areas can be learned/compensated for in other ways to the point of not being as disruptive, says our docs.  Some areas, like the word retrieval, he may need to develop academic strategies around. 

    I can understand your fears and trepidation.  I work in an environment wtih yuoung adults and when I hear ASD, I think of the young men and women in my environment who struggle as young adults with this diagnosis and it worries me like crazy.  BUT I have to remind myself that the nature of my job is to help struggling young adults, there are lots of reasons why folks struggle besides ASD, and I know from colleagues across my organization we have plenty of young adults in our organization who are thriving w/ ASD.  My son got diagnosed right after Newtown and all the discussion of the shooter's diagnosis and all the stigma the diagnosis faces.  BUT, I had to do some soul searching to put all my preconceived ideas and fears aside.  The more folks I talked to, the more I realized "so and So's" child also had this diagnosis, or didn't have the actual diagnosis, but was also in SLP, OT, behavioral therapy, using town special ed services, etc.  Getting specialized therapies and services NOW is key b/c the brain is still developing and coming up with alternative ways of thinking/speaking, coping, learning, etc. is SO MUCH more impactful now than in a few years from now.  And even if it is a misdiagnosis or an overreaction, it is way better to be cautious now, do lots of brain-stimulating therapies like SLP and OT which to the kids is like giant awesome playtime, then to find out down the road something is missing.  My one piece of advice/regret is that inconsistency much more RULES IN a diagnosis than RULES OUT.  I wasted a lot of time debating b/c I had a misconception that these behaviors were noticeable and consistent all the time.  My advice: Better safe than sorry.  For my son, he is "high functioning" and has the basic foundations for all the areas he struggles in which is a pretty good place to be in and I have friends and peers whose children may not have as many foundations as my son has and have a more severe version of the diagnosis.  But, I confused those foundations for meaning he didn't have the diagnosis at first and I realized in the earlier evaluations, I was trying to convince evaluators he WASN'T ASD b/c he had these foundations and had really good days, rather than be open to he MIGHT be ASD b/c he doesn't do these things consistently, there's disruption, and he struggles at times.  The bottom line is, if your son has enough signs/symptoms right now, it will open up a world of therapies for him that will be highly beneficial and even fun for him.  But, they are so young, as my pedi-neurologist says, it is a very FLUID diagnosis b/c these therapies can be impactful enough at this age with someone high-functioning, that enough can get addressed that he may not even trigger enoguh symptoms in the future to keep the diagnosis.  This isn't true of all ASDs and more moderate/severe diagnoses may have symptoms that can't improve or plateau at a certain developmental point, but I would say if someone is inconsistent enough that you are thinking "but he CAN do this, and he CAN do that, just not all the time.  Could he really have ASD?" better to address it so the skills are more consistent now, then have them become ingrained and more disruptive in the future.  The behavioral therapist astutely observed that my son's symptoms are sublte enough that at the pre-school age, it could be chalked up to gender, sugar, lack of sleep, hyper, off-day etc., but she could see enough that could be really problematic 2nd or 3rd grade, when more structured learning is required.  Thus, better to address it now and come up wtih strategies, then have it really interfere or seem like a huge behavioral issue later on.


    Good luck!!!!  I wish you and your son the best.  I have my days where "I can do this!" and I have my cryfest days.  It helps me to be grateful for this adorable little guy and put into perspective that his symptoms are mild and he is very high functioning.  There are parents facing much more struggle than me.

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    Re: Newly Diagnosed ASD

    Stefani - just saw my post when I sat back down at the computer and I did a terrible job of answering you.  I had so much pent up about the diagnosis process it all poured out in barely understandable English.  Quite a rant!

    So I am going to just list for you the signs/symptoms we have noticed.  Some were slightly evident before three.  Most were more obvious/disruptive after three.  Let me say the confusing part is he does some of these once in a while (20-30% of the time), some of them a little more frequently, like 50-60% of the time, and one or two much more often.  But nothing is ALL the time and he has days or even weeks, where the behaviors are not there or are not noticeable.  But then, he will have a sitatuion or a few days where he is also textbook ASD.  It was really hard for us to make heads or tails, until we realized that inconsistency of symptoms is diagnostic, it doesn't rule ASD out, in fact, it more likely rules PDD in when you have enough of these going on in different ways, inconsistently.  I remember reading somewhere "inconsistency is the hallmark of PDD."  

    Over time, we observed: preference for routine, schedules, sometimes inflexibility (likes to get dressed in the same order most of the time); tactile issues (no shirt tags, preference for certain shoes, liked lots of heavy blankets); poor sleep; would not always respond to name or directions;  liked to run/walk in circles at times; toe walking occasionally; sideways looking at certain toys while playing; hyperactivity; love of rough play, but not in an aggressive way; good vocab/rote memory, but poor word retrieval and use of expressive language (could tell you all about the days of the week, could answer what/when questions, but had difficulty with who, why, how questions); minimally imaginative play (might play grocery store a little, but would much rather build a lego boat then play with the boat when complete); loved lining up toys and had a set order, although he might change is order over time - in the Thomas stage this didn't stand out b/c all gthe toddlers line up choo choos, but when he started doing it w/ race cars and older kid toys, more noticeable.  He can play imaginatively w/ his race cars, zoom them and make up stories, but it has to be on his terms and his play will be a mixture of function and imagination;  He will occasionally care more about the parts of a toy than the whole (spin truck wheels and watch, carry around certain puzzle pieces) but this was confusing b/c he would also play typically with these toys; He struggles with eye contact in novel situations like 60% of the time; He needs a lot of prompting and reminding to get to a point where he more readily greets and says goodbye to people.... would still prefer to greet wtih a hug then eye contact and verbal hello; He will point and whine for things when he couldn't find the word; would be very vague or evasive in describing things his peers could easily talk about (talk about what they did over the weekend, what Santa brought); fast running "motor" in overstimulating environments; "ants in pants" often; agitation/hyperactivity wtih some overstimulating environments - hit face, cover ears, cover eyes, avoid crowds at house parties and BBQs.  A little late potty training;   He fists writing utensils rather than a "tripod" grasp and his coloring looks more like a 2yo.  He doesn't avoid messy things like you hear wtih some kids with sensory issues, but he has to be cleaned the minute he is done with the messy thing.  He has trouble controlling impulses and when a little younger, had poor risk awareness and would also dart off.  That has improved greatly. 

    Anyway, this is everythign I could think of.  Again, when I write it all out, some parts sound like a typical pre school boy.  But there are also aspects that sound very much like textbook ASD, but for us, either we were in denial or they weren't all at the same time or happening consistently enough to notice a huge pattern until later.   It was all happening on/off and inconsistently.  At times it seemed age/gender appropriate and other times it seemed very off from his peers. 

    Whew - this was still long.  I guess if you are questioning it, I am trying to help you NOT do what I did.  I was in slight denial and I would also read checklists of lots of classic, textbook symptoms and think "Well he doesn't do that at all, so he can't be that severe."  "Well he only does that some of the time" or "he does that once and a while, but don't all kids?"  The checklists really gave me the misperception that these had to be symptoms happening all the time/consistently and very noticeable/disruptive.  I think it made me under-report some of his struggles earlier on.   I still remember those mandatory Autism checklists you do at the pediatricians and I am pretty sure there were times I don't think anything triggered  before 3, at the most I checked off 1 or 2 things, that I could then easily minimize or explain away.  My basic message is, as they say, "When in doubt, check it out!" Better to over-address now then miss something, in my opinion.  A diagnosis can be reevaluated and taken away at a later point when/if the child catches up developmentally.  To me that is far less problematic or worrisome to over treat now, than to miss the diagnosis at a very important developmental stage right now, when the brain is still forming, and lose the opportunity to intervene/teach/adapt early.

      On a positive note, today I saw a friend whose DS is 2 years older than mine, similar diagnosis, but also with gross motor delay before 3.  Even compared to last summer at 5, he was like a different kid today at 6.  I don't think I ever even heard his voice or had a conversation wtih him before today b/c he just couldn't do it.  He would mostly gesture or avoid at events like this in the past.  Mom or dad would have to spend BBQs and parties in a seperate area, with lots of hands on activities and redirecting, special food, etc.  After a few years of support through EI, public school integrated pre-school w/ OT, SLP, social skills, and ABA, he acted, played, and interacted on par with same-age neurotypical kids at the party today.  It was absolutely amazing and breathtaking to see him spontaneously converse, interact, be flexible, knowing just how far he'd come in a few short years.  Getting intervention early and a diagnosis early were extremely helpful for him.  It was a helpful reminder that although it was hard to hear my son has this diagnosis and I feared "what does this mean", and although it's at times been overwhelming with all the evaluations, treatment appointments, public school IEP process, insurance advocacy, etc; I would rather get as much support possible now while his little brain is developing, to make it easier for him in the future.  My friend's son is good proof of intervening early. 

    I wish you the best, Stefani!

  8. You have chosen to ignore posts from tbracer39. Show tbracer39's posts

    Re: Newly Diagnosed ASD

    My son is six and while never has been officially diagnosed, sounds a lot like your son...poor word retrieval, poor expressive language, sensitive to noise, poor risk awareness, etc.

    If you do go the public school route, at least in my town they did provide transportation to a location that isn't your home, but it does have to be within the town. We got about 6 months of EI in before getting the boot because of age. He then went right to preschool, but it was a full day program except for Fridays (when he took the bus to daycare). We had an awesome experience.

    I was also terrified of my "baby" being on a bus (well van), but last year we had no option and had to take the offer. He LOVED it! This year he's in an integrated K program not at our "home" school and takes the van. It's his favorite part of the day and the van driver is so caring and compassionate. I love her! He grabbed the wrong backpack off the van the day they did their "Christmas" shopping at school. He was so upset. When she realized on her own he grabbed the wrong bag she called me and brought it back to the house at the end of her route. He's going back to his "home school" next year and will be walking to school. I'm sure he'll miss his Bus #6 :-)

    Conversational speech hasn't really blossomed until this year and I must say now that it's coming along, he keeps us laughing. We had his IEP review for 1st grade and he will continue to get speech services and have "movement" breaks. He is in the "advanced" reading group and will not have an IEP for math as he tests normally for that.

    Not sure if any of this is helpful, but just wanted to let you know things will work out. I really feel every teacher/specialist that has worked with my son has touched his (and our) lives. He's healthy, happy, has friends that think he's great. He plays sports and coaches love him. So hang in there!