New tool aimed at teens with autism
February 3rd, 2011
01:35 PM ET

New tool aimed at teens with autism

If the years immediately following an autism diagnosis aren't tough enough for a child, the next phase of their life can be even more stressful. Which is why Autism Speaks, one of the biggest autism advocacy groups is unveiling a new tool kit designed to help these children and their families cope with this stage of life.

Life as a teenager is filled with many changes. Hormones are raging, the body's changing, teens move to middle and high schools, and there are a whole new set of social expectations and planning for life after high school. This is difficult terrain to maneuver – and it can be even more challenging if you are teen with autism – the developmental disorder that makes social interaction and communication more difficult.

By the time children with autism reach adolescence, their parents have spent a lot of energy trying to figure out the puzzle that is autism.  It usually involves work to get their children the proper therapy and education needed to help them cope with this neurodevelopmental disorder. Now they are living with a teen who can be moody or more difficult – not because they have autism, but because they are going through puberty.  Plus, parents have to start planning for their child's future, facing the reality that the years when education systems are required to help their kids improve are dwindling. Soon their child will have graduated from school and the resources available to help their child cope with the many facets of autism will be few.

Peter Bell is the father of an 18-year-old son with autism and the Executive Vice President for Programs and Services with Autism Speaks. He along with so many other families are in the middle of this phase of transitioning his child from childhood to adulthood. "We feel like pioneers," Bell says. He says there really wasn't anything available  to guide them through this phase of his child's life. So the organization gathered experts and professionals and added parents and asked for their help in developing a tool kit, Bell tells CNN.

This Transition Tool Kit is another online guidebook Autism Speaks has put together.  Its first "100 days" tool kit, introduced a few years ago, was specifically created for parents of newly diagnosed children to make the best possible use of the 100 days following their child's diagnosis of autism.  A tool kit for schools and the community followed.

"This is the next natural progression" says Bell.  "This Transition Tool Kit is for the 14 to 21 age group."  While there are different types of autism and within those categories each child's disorder may manifest itself in a different way, Bell believes that "the vast majority of the [autism] spectrum will benefit from this took kit.  There are sections that I think will be relevant for almost everyone."

This handbook emphasizes the importance of involving the teen in the decision-making process that affects his or future.  Bells says the child must be part of the decision-making process regardless of their ability level.  While some children with autism may not be able to communicate, that doesn't mean they can't be part of the meetings, says Bell.  He says this new tool kit provides tips on how each child with autism can participate in the decisions that will affect his or her future.

There are other tips to help families conquer the challenges of moving from childhood, through to teen years and to adulthood.  Bell says, for example, that he doesn't believe his son will be going to college, so he may skip that chapter.  However he says he will look at the chapter about housing because he knows at some point his son will have to live away from home – even if that point is 15 or 20 years from now.  He says parents should start preparing for this as early as possible.

The kit also provides a timeline and other organizational tools that can help parents navigate their child's adolescent years.

Parents and children can download a PDF version of the tool kit from the website. But Bell says Autism Speaks also offers the option of ordering hard copies of all the tips and providing information customized to specific cities.

soundoff (42 Responses)
  1. Anna

    Thank you so much for putting together this very useful tookit. It will help parents and teens alike.

    February 3, 2011 at 15:22 | Report abuse | Reply
  2. Alycat

    Wish they had something like this when I was growing up, as well as for those with Asperger's...My mother could have really used this.

    February 3, 2011 at 15:55 | Report abuse | Reply
  3. Arman Khodaei

    I think this tool kit is a good idea. I am an adult with autism, and I know there is very little for many of us once we reach our twenties. I run a group for young adults like me, but would like to see more stuff out there for adults. But, I think this tool kit is a step in the right direction.

    Here are two blog entries I wrote about in terms of dealing with teenagers with autism http://www.armankhodaei.com/adventures-in-autism/2011/1/9/how-to-handle-a-teenager-with-autism.html
    Also, this one talks about some of the positives of having autism http://www.armankhodaei.com/adventures-in-autism/2010/11/23/strengths-weaknesses-of-autism-aspergers-syndrome.html

    February 3, 2011 at 16:33 | Report abuse | Reply
    • tmontagna

      Autism is a very very wide spectrum; if you have ever seen Mr. Bell's child ( on TV or other ads), he is an adorable young man, however is not able to really communicate as you are. I would say that the two of you are coming from "opposite ends of the spectrum".

      February 3, 2011 at 21:18 | Report abuse |
  4. MikeTheInfidel

    I'm just glad this article's comment section has not been inundated with people foaming at the mouth about the 'evils' of vaccines...

    February 3, 2011 at 19:58 | Report abuse | Reply
  5. David

    ADD perhaps, Autism not so much.

    February 3, 2011 at 20:17 | Report abuse | Reply
  6. Holier Than Thou Mom

    Now that you mention it, I never vaccinated my great little Austin and Brytinni and they never had a sick day in their life!

    Unfortunately, half of their classmates now have the measles or polio. But then again THEIR PARENTS don't give those kids enough vitamin C!

    February 3, 2011 at 20:27 | Report abuse | Reply
    • tmontagna

      No one has been diagnosed with polio in this country in decades! Vaccines have nothing to do with this story and they do not cause autism! If you do not vaccinate your children, I'm just glad they don't attend school with my children.

      February 3, 2011 at 21:08 | Report abuse |
    • Mr Wonderful

      Why are you so glad the unvaccinated kids don't attend your kid's school? Didn't you vaccinate them? Or don't they work?

      February 4, 2011 at 03:56 | Report abuse |
  7. Peter Seebach

    I am very concerned to see Autism Speaks getting this kind of propaganda, given their history of active hostility to actual autistic people. I do not feel that I am being spoken for by people who campaign to have me and people like me eliminated. In short, this may be a good thing, but knowing who it's coming from and their history, I don't trust it.

    February 3, 2011 at 20:28 | Report abuse | Reply
  8. Jennifer

    Seems like a valuable resource – BUT – as a parent of a "about to be diagnosed" (doctors have been kicking around this diagnosis for 6+ months) child with moderate-to-high functioning Autism, I was DENIED acess to the kit when I called.

    "Call back when you get the official diagnosis" was their response.

    February 3, 2011 at 20:37 | Report abuse | Reply
    • Kathy B.

      i'm a little confused... you can download the toolkit for free from their web site... http://www.autismspeaks.org/community/family_services/transition.php

      February 4, 2011 at 10:37 | Report abuse |
  9. Cbyrd

    Autusm first off if is a Trichromial disorder where the inflicted person has an additional chromosone, vaccines have nothing to do with it. I will agree, ADD is very overly used as a diagnosis for children that are just bored. When I was 7 my teachers screamed to my parents to have me tested for ADHD and my parents did. After being placed on dexadream and riddlin regiments they noticed that not only my spontanuity was gone but also my drive for any sort of intellectual thought. After a few months of this my parents thankfully took myself off of the medications. Dealing with ADD or ADHD should not be in a pill form but rather a collaberative of texts to educate parents and teachers on how to manage it with the least effort and maximum results. What my parents did for me was introduce video games into my life and use that as reward system and my father went to the extent of taking countless hours on patience pratice with me. The secret in a condition such as this takes training in the train of thought. If you can teach a child analytical thought process when they have ADHD or ADD then you will solve any problems occuring with the extra energy.

    February 3, 2011 at 20:54 | Report abuse | Reply
    • tmontagna

      Thank you for that story; I too feel that children are over medicated. A lot of the problem of today's youth can be solved with other methods.

      February 3, 2011 at 21:12 | Report abuse |
    • amy

      Wow. Inflicted? Trichromial? Chromosone? Regiment? Spontanuity? That's just for starters, not even counting the drug names... The one that really got my attention was "trichromial"... I am guessing you were trying to say it is some sort of trisomy syndrome and not something to do with primary colors (trichromic, etc.). Straight up misinformation, people! Perhaps you have autism spectrum disorders confused with Down Syndrome (Trisomy 21 Syndrome)? Huge difference. There is not a translocation nor triplication of one or more chromosomes that has been associated with autism. Research continues into the cause(s) of the spectrum disorders and any genetic components.

      February 3, 2011 at 22:15 | Report abuse |
    • Maurine Meleck

      You'd better hit the books again or call dad.. You've got the wrong disease for an additional chromosome.

      February 3, 2011 at 23:24 | Report abuse |
    • Trainspotter

      If autism could so easily be diagnosed through genetic testing (additional chromosomes have it) why is this not the standard test for autism diagnosis? I don't believe vaccines cause autism, but I also don't like when people make statements that they claim are fact when they are really just opinion. I also don't agree with making blanket statements that either medicating or not medicating is the answer. A huge disservice to those affected is done by claiming that if their parents put in more effort to "stimulate" their minds, they could control this condition. Pure rubbish.

      February 4, 2011 at 04:18 | Report abuse |
  10. Steven

    what people need to realize is that having autism means you are in the beginning stages of evolving into a newer, more advanced form of human. The way the general population currently thinks & acts is actually not that great/advanced and will be surpassed by a new way of being. In the future we will evolve to become an emotionless, robot cyborg supercomputer like being and the way we are now will be looked upon as so ancient and unadvanced that we might as well be caveman. It's the truth, im working on this site: http://www.autistic-supremacy.com

    February 3, 2011 at 23:02 | Report abuse | Reply
  11. Bill

    Thanks Phil for this very helpful comment. Thank goodness I now know that over diagnosis is the problem! Now I feel much better about my daughter who hasn't spoken a word in seven years and beats her head on concrete floors. I appreciate your helpful insights. I will sleep better tonight...will you?

    February 3, 2011 at 23:06 | Report abuse | Reply
  12. Maurine Meleck

    We're going to need a whole lot more than transition kits we can download off the internet. For starters, most of us have spent all our money and more on our sick children Very few of us believe autism is a puzzle. We watched our normally developing fall into autism following vaccines. Most of us are blocked from gaining compensation in Vaccine Court-so how can we provide for our kids when they are out of school. There will be very few places for them to go. The economy is at its knees and soon a million children in the US will reach adulthood.. Who is going to help. Right now states are removing dozens of programs for disabled children and adults. I doubt most Americans realize we are stuck on the track and the train is coming. Wonder how taxpayers will feel when they have to support our sick children and most will never be fully independent. Autism families are never goi ng away. Maurine Meleck SC

    February 3, 2011 at 23:14 | Report abuse | Reply
    • worksinthefield

      while i can only imagine your stress and heartache over your child's situation – they are not 'sick' just because they have an autism spectrum disorder. i know all too well about the funding being cut in the area for adults with developmental disabilities but the resources are there. if you are having trouble sorting it out – contact your state's department of health and human services.

      as for not getting money in vaccine court.. that's because all studies have shown that vaccines do not 'cause' autism. it is a sad coincidence that autism starts to present itself around the same time children get vaccines. people have this link in their head because of a flawed and skewed study that has been proven crap many times over. it makes me even more angry that then other groups are repeatedly wasting money trying to replicate the study with the desired results. all studies since have shown NO LINK. what is it called when you keep doing something over and over and expect different results? insanity.

      that money should be used for research that could learn something.

      February 4, 2011 at 09:53 | Report abuse |
    • Lou

      Try Vitamin D Council website and go to Autism section on the left. Read the theory of vitamin D and autism and then read those case reports where autistic kids improved dramatically after taking high dosage vitamin D. Autistic kids tend to have very low vitamin D level (and mothers too). I think it all starts in the womb and you probably had low vitamin D level. Vitamin D is crucial to brain development starting in the womb. Also, vitamin D is crucial to proper immune function so it may have backfired and made the symptoms of autism worse when exposed to vaccines. Vaccines may be merely a trigger but not a true underlying cause. It looks more and more like that vitamin D deficiency may be the root cause.

      February 4, 2011 at 14:07 | Report abuse |
  13. Maurine Meleck

    It also produces a lot of people with little intelligence

    February 3, 2011 at 23:16 | Report abuse | Reply
  14. beentheredonethatx2

    Every generation of parents thinks they are the pioneers... this stuff is yet another set of derivative work that is based on the research of people who have been actively engaged in understanding best practices in transition planning for autism and intellectual disabilities, going back at least 50 years. Probably much longer. There are dozens of wonderful transition planning books, websites and programs. People get masters degrees and doctorates in this field. I wish Autism Speaks would stop pretending (or being deluded into thinking) that they know more than the people who worked things out years before them. Next they will claim they discovered person-centered planning, supported employment, supported living, and the medical home model of care coordination. And, I wish they were more respectful to adults with autism and Aspergers who have learned to advocate for their own needs and make lives for themselves.

    February 3, 2011 at 23:20 | Report abuse | Reply
    • worksinthefield

      you are correct, sir. THANK YOU.

      February 4, 2011 at 09:43 | Report abuse |
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    February 4, 2011 at 00:48 | Report abuse | Reply
  16. maxwell

    Dear Phil , I only hope that you never have to watch as your daughter whom you love beyond words cries because her daughter , your grandaughter does not recognize her or has never said "I love you". I witness this first hand and God help you or your loved ones, God spare you that you don't have to eat your words. Please think before you generalize and make moronic statements llike the one you did. Of course there are problems with diagnosing especially with Autism but trust me, it does exist and it is devastating.

    February 4, 2011 at 01:44 | Report abuse | Reply
  17. Edward Brennan

    To Miketheinfidel, this one is for you:


    Go Andrew Wakefield!!!

    February 4, 2011 at 09:44 | Report abuse | Reply
  18. Edward Brennan


    You are wrong about vaccine court decisions. There has been a lot of money paid out. The reason for this is that the parents did not use the word Autism in their claim. Instead they used PDD and other similar terms.
    Also, there is the Poling case in which it would found that vaccines served as the trigger which aggravated the child's underlying mitochondial condition leading to the child's autism. Though it is claimed that mitochondrial conditions are rare, a recent study found that a highly significant number of autistic children had mito problems.

    There are other cases like Bailey Banks and Elias Tembenis in which the parents were awarded money by the vaccine court. People need to research this instead of just listening to the mainstream press and big pharma's press releases, as well as Dr Offit's periodic ramblings to reporters.
    This is what many of us who are concerned about vacs have been saying that the shots served as a trigger to a debilitating process that affected the body as well as the brain.

    Secondly, what studies are you talking about that have disproved the link? If you are talking about the Danish Studies, and the Swedish studies, and even the Vaerstaten study, go to fourteenstudies.org. JB Handley effectively discusses these studies, their design defects, their thrown away data, their data misinterpretatins, and the conflicts of interests of those who finance, administer, and conduct the studies.

    As far as Wakefield is concerned, he did not nor could he have been able to change the records of the 12 subjects of Wakefield's case series. He had no access to them, unlike the free lance journalist who somehow got his hands on them, mysteriously. And there are other studies that have backed up Dr Wakefield's case series conclusions that there was a connection betw GI problems and their autism, which merited further study.

    So you want to use research money wisely, then let's get some of the millions of $ spent on genetic studies and actually look at the kids who suffer from autism's medically connected symtoms, and how they affect the brain.

    February 4, 2011 at 11:56 | Report abuse | Reply
    • Anne Dineen

      As with most disorders, Autism too most likely has multiple causes for various individuals–some vaccine triggered, some genetic some environmental, viral, etc.

      February 19, 2013 at 05:58 | Report abuse |
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