What's best for her autistic teenage son?

Posted by Barbara F. Meltz  February 9, 2011 06:00 AM

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Hello,
I have a severely autistic son who is 15. I am thinking of putting him in a group home because he has become very violent towards himself and me. I am not sure if this is the right choice? I need help in understanding what is right for him. I love my son so much but not sure if he is better in a group home or not? Thank you.

From: Carmen, San Jose, CA

Dear Carmen,

This is such a huge and complex question that I wouldn't begin to presume to be able to help you. For one thing, I have no idea what's available in California. But I consulted with Michelle Alkon, a friend who is the coordinator of Adult Services at AANE (Asperger’s Association of New England) and also the parent of two kids with Autism Spectrum Disorders (ASDs).

Here are her thoughts:

"A 'group home' is not typically one of the service delivery models offered to a 15-year old, absent other support services. There are some wonderful residential programs that offer group living options but it is part of a spectrum of services offered to educate the child. There is so much we don’t know about Carmen’s situation that we would have to understand before we could help her. It sounds like she is talking about putting him in a sort of foster care situation -- giving him up because she cannot care for him adequately. There are many alternatives available before ceding guardianship to the state (they are as varied as a residential school or home-based respite services). She may have gone through these options already or is just at her wits’ end."

Chances are you already know about these resources, but in case you don't, here's where to turn for help. Any one of them should be able to steer you to folks who have the experience and expertise to help you in your decisions:

(1) Autism Speaks, which is based in New York City.

(2) The Online Asperger Syndrome Information and Support Center (OASIS) (enter your state and look under information & advocacy).

(3) The California Department of Developmental Services: Alkon says that last agency ought to be able to provide you with someone on the ground, who can help 1:1.

(4) Last but not least, if be sure to be in touch with your school and community liaison person.

I answer a question from a reader every weekday. If you want help with some aspect of child-rearing, just write to me here.

This blog is not written or edited by Boston.com or the Boston Globe.
The author is solely responsible for the content.

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7 comments so far...
  1. I also have a 15 year old autistic son who was violent towards us. He has now been diagnosed with Bipoplar as he has a mood disorder. He is on medication that has calmed him down considerably. He has just come back from a specialist unit dealing with mental health issues where he has been the last six months.

    Fingers crossed he will be able to stay with us for another 2 or 3 years until we can find a good shelter unit here in the UK.

    Posted by Hayley February 9, 11 09:00 AM
  1. Congratulations to you for having kept him at home for this long. As the step-sister of a profoundly autistic young man I know that is an exhausting 24 hour a day job to take care of him. No where do I get the sense in your letter do I get the sense that you are trying to give him up to foster care. Not sure where that came from. My step-brother has been enrolled in New England School for Children (NEC) for years and lives in a group home. This is a wonderful caring environment which is able to provide the extremely regimented life he needs as well as a constant supply of rested adults to make sure he does not accidentally harm himself or others. It is a terribly difficult decission to send your child away from home. My mother and step-father made this choice when they realized that their marriage could not survive the strain that lack of sleep and 24 hour vigilance was taking on them. Additionally, they were concerned that he could unintentionally prove to be dangerous to his younger sibling, and they needed to know that he was in a situation where he would be taken care of if anything happened to them. Best wishes to you.


    does not harm himself or others.

    Posted by annie February 9, 11 06:02 PM
  1. Cure Autism Now has been "out of business" since 2005.
    A resource for families would be: Talk about Curing Autism (TACA)
    that provides information to families including for teens and adults.

    ww.tacanow.org

    Posted by another autism dad February 9, 11 06:21 PM
  1. First of all, there is an incorrect link in that article.. "Cure Autism Now" leads to "Autism Speaks", which is a completely different organization. Although, Autism Speaks is a much better resource IMHO.

    My heart goes out to both Carmen and Hayley. The advice here is sound. Get as much help as you can.

    Posted by outoutout February 9, 11 06:48 PM
  1. Hi another autism dad and outoutout - Thanks for reading and commenting. Cure Autism Now and Autism Speaks merged in 2007, and the combined entity is known now as Autism Speaks. I'll change the wording in Barbara's entry. You can read about the merger here if you like: http://www.autismspeaks.org/press/autism_speaks_can_complete.php

    Posted by Angela Nelson, Boston.com Staff Author Profile Page February 10, 11 08:50 AM
  1. Nowhere in this description does it sound like the parent wants to put there child in a foster home. This is just another classic example of someone who knows absolutely nothing about autism or what it is like to care for an autistic child. All anyone wants to do is paste links and say good luck. My son is 6 and becoming aggressive, and we have tried medications, therapies, and any other treatment offered by medical science, but we are most likely going to place our child so he has a better future and doesn't hurt my family. You tell your friend if the child is violent most likely it will get worse and decide whether this is the safest thing for him and her. There are ICF care facilities and Group Homes for placement. Basically you just need to call a local behavioral clinic or agency and put him on the placement list. Then agencies will call you when they have a bed open. Then you decide if you would like your child there or not. Good luck and I will pray for you. Oh and by the way GH's do accept 15 year olds. Most will care for them until 18 and then transfer them to an adult home. I have lived autism for six years with my child and I have an idea how this works.

    Posted by Someone who knows February 10, 11 11:15 AM
  1. Severe autism is the opposite side of the specturm, a side few people know or understand, mostly because media is largely ignorant about the realities of severe autism. The fact is most severely autistic persons are hidden away in group homes, institutions and foster care systems. Nobody sees them. They are often chemically restrained with drugs like haldol, thorazine, mellaril and risperdal or abilify. They are locked in their own world and then their brains are further insulted and stifled by harsh, aversive drug therapies that leave them helpless and without a voice. Who is advocating or speaking up for this side of spectrum?

    Posted by Carol July 29, 11 02:01 AM
 
7 comments so far...
  1. I also have a 15 year old autistic son who was violent towards us. He has now been diagnosed with Bipoplar as he has a mood disorder. He is on medication that has calmed him down considerably. He has just come back from a specialist unit dealing with mental health issues where he has been the last six months.

    Fingers crossed he will be able to stay with us for another 2 or 3 years until we can find a good shelter unit here in the UK.

    Posted by Hayley February 9, 11 09:00 AM
  1. Congratulations to you for having kept him at home for this long. As the step-sister of a profoundly autistic young man I know that is an exhausting 24 hour a day job to take care of him. No where do I get the sense in your letter do I get the sense that you are trying to give him up to foster care. Not sure where that came from. My step-brother has been enrolled in New England School for Children (NEC) for years and lives in a group home. This is a wonderful caring environment which is able to provide the extremely regimented life he needs as well as a constant supply of rested adults to make sure he does not accidentally harm himself or others. It is a terribly difficult decission to send your child away from home. My mother and step-father made this choice when they realized that their marriage could not survive the strain that lack of sleep and 24 hour vigilance was taking on them. Additionally, they were concerned that he could unintentionally prove to be dangerous to his younger sibling, and they needed to know that he was in a situation where he would be taken care of if anything happened to them. Best wishes to you.


    does not harm himself or others.

    Posted by annie February 9, 11 06:02 PM
  1. Cure Autism Now has been "out of business" since 2005.
    A resource for families would be: Talk about Curing Autism (TACA)
    that provides information to families including for teens and adults.

    ww.tacanow.org

    Posted by another autism dad February 9, 11 06:21 PM
  1. First of all, there is an incorrect link in that article.. "Cure Autism Now" leads to "Autism Speaks", which is a completely different organization. Although, Autism Speaks is a much better resource IMHO.

    My heart goes out to both Carmen and Hayley. The advice here is sound. Get as much help as you can.

    Posted by outoutout February 9, 11 06:48 PM
  1. Hi another autism dad and outoutout - Thanks for reading and commenting. Cure Autism Now and Autism Speaks merged in 2007, and the combined entity is known now as Autism Speaks. I'll change the wording in Barbara's entry. You can read about the merger here if you like: http://www.autismspeaks.org/press/autism_speaks_can_complete.php

    Posted by Angela Nelson, Boston.com Staff Author Profile Page February 10, 11 08:50 AM
  1. Nowhere in this description does it sound like the parent wants to put there child in a foster home. This is just another classic example of someone who knows absolutely nothing about autism or what it is like to care for an autistic child. All anyone wants to do is paste links and say good luck. My son is 6 and becoming aggressive, and we have tried medications, therapies, and any other treatment offered by medical science, but we are most likely going to place our child so he has a better future and doesn't hurt my family. You tell your friend if the child is violent most likely it will get worse and decide whether this is the safest thing for him and her. There are ICF care facilities and Group Homes for placement. Basically you just need to call a local behavioral clinic or agency and put him on the placement list. Then agencies will call you when they have a bed open. Then you decide if you would like your child there or not. Good luck and I will pray for you. Oh and by the way GH's do accept 15 year olds. Most will care for them until 18 and then transfer them to an adult home. I have lived autism for six years with my child and I have an idea how this works.

    Posted by Someone who knows February 10, 11 11:15 AM
  1. Severe autism is the opposite side of the specturm, a side few people know or understand, mostly because media is largely ignorant about the realities of severe autism. The fact is most severely autistic persons are hidden away in group homes, institutions and foster care systems. Nobody sees them. They are often chemically restrained with drugs like haldol, thorazine, mellaril and risperdal or abilify. They are locked in their own world and then their brains are further insulted and stifled by harsh, aversive drug therapies that leave them helpless and without a voice. Who is advocating or speaking up for this side of spectrum?

    Posted by Carol July 29, 11 02:01 AM
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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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