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Posts Tagged ‘Asperger’s Syndrome’

LIVE Chat with Geri Dawson, PhD & Lisa Goring Analyzing DSM-5

January 20, 2012 15 comments

Chief Science Officer Geri Dawson, PhD and Family Services Vice President Lisa Goring hosted a LIVE Chat to address concerns sparked by this week’s New York Times article on proposed revisions to the medical definition of autism spectrum disorder in the DSM-5, to be published in 2013. Readers heard about its potential implications for individuals to receive an autism diagnosis and appropriate services.

2:56
Hello everyone! This is Dr. Dawson. Thanks for joining us today to discuss the new DSM changes. We’ll be starting momentarily.
2:57
Hi All! Thanks so much for taking the time to be with us today. We look forward to the chat!
3:00
Comment From jennifer

Does the new DSM effect children already diagnosed…I have two with PDD-NOS….will their services change?

3:02
Hi Jennifer, This is Dr. Dawson. The new system has yet to be implemented. But once it is implemented, if your children were assessed again using the new system and, if they didn’t qualify for an ASD, theoretically yes, if could affect their eligibility for services. Autism Speaks will be monitoring this carefully. We want to make sure that no one is denied the services they need.
3:03
Comment From JenB

I read the new definition on the NY Times site. Is this the final definition or could it change? Would children who when first diagnosed met the criteria but who have been helped by intensive therapies and may not still meet them to the same degree (but still need therapy to continue to gain ground) be kicked out?

3:05
Hi Jen, This is Dr. Dawson. The APA committee that is developing the new criteria is in the process of finaling the criteria. They expect to be done in December. Then, they will conduct field trials to see how the criteria work in the real world. You ask a good question: What if a child no longer qualifies for a diagnosis because they received treatment? This will have to be decided byindividual school systems and other policy makers. We will be working hard to advocate to make sure that those children who are improving but still need services are able to retain them.
3:06
Comment From Robin

will children who are already classified be “grandfathered” per se or will we lose our classification and our services

3:07
Hi Robin, it’s Lisa – Services should be based upon the child’s needs. We will be monitoring it to make sure that individuals get the services they need.
3:09
Comment From Tavia

What does DSM stand for? Thank you.

3:09
Hi Tavia, This is Dr. Dawson. The DSM standards for the Diagnostic and Statistical Manual of Mental Disorders by the American Psychtriac Association. It is the manual that doctors use to diagnosis conditions such as autism.
3:10
Comment From Jeanie

What about children who currently have a diagnosis of PDD-NOS or Asperger’s? Will they have to be reassessed once the DSM-V rolls out, or can their current diagnoses stand?

3:11
Hi Jeanie, this is Lisa. Although it is possible that some service providers or funders could request a re-evaluation, especially if your child is seeking new services, it is our hope and understanding that the current diagnosis will stand for existing services. Presently, most social service programs require an assessment to determine eligibility.
3:12
Comment From Rebecca Pavlik

I am very scared about this new diagnostic criteria. My son is PDD-NOS I have read as many as 85% of those children will be ruled out with the new criteria. My son has a 2 year developmental delay. He is ten reads at a 1st grade level, cannot write legibly, already receives basically no services outside of SSI and Medicaid. What will happen to all of these kids?

3:12
Hi Rebecca, This is Dr. Dawson. The study discussed in the New York Times article is very preliminary and probably overestimated the number of children who would be denied a diagnosis with the new system. So, hang in there. Given that your child has a two year developmental delay, he should qualify for services regardless. In any case, we are going to monitor this carefully to make sure that kids don’t get denied services under the new system.
3:15
Comment From melissa

what can we as parents do??

3:15
Hi Melissa it’s Lisa – As parents we need to stay updated and understand the guidelines and we need to continue to advocate for the services that our children need.
3:16
Comment From Bonnie

Will it be posted somewhere so we can read all the changes that are being made?

3:17
Hi Bonnie, that’s a great question. the American Psychiatric Association (APA) has a website that details all the information and background about the proposed changes to DSM-5. Here is a link: http://www.dsm5.org/Pages/Default.aspx. Thanks, Lisa
3:18
Comment From Guest

What is most disturbing to me is that the powers that be seem to see this as a way to solve the autism epidemic. Is there a governing board higher than the APA that keeps this in check?

3:19
Dear guest (at 3:12), This is Dr. Dawson. The proposed changes in the DSM will not “solve the autism epidemic.” In fact, research has shown that the broadening of the diagnostic criteria only account for a portion of the increase in autism prevalence. Approximately 50% of the increase remains unexplained. Autism Speaks is committed to understanding why there has been a dramatic increase, focusing on possible environmental risk factors that could be contributing. We are currently funding a study to get more accurate estimates of the prevalence of autism in the US and around the world and many studies focused on environmental risk factors. It’s up to all of us to work together make sure that the changes in the DSM don’t end up discriminating against people who need services.
3:21
Comment From Mara

How will this change affect our kids as they grow, will they still be protected under American’s with Disability Act?

3:21
Hi Mara, your question about protection under the American Disabilities Act (ADA) is a great one. Fortunately, autism will continue to be protected under the ADA. The proposed changes have nothing to do with changing the disability status of autism.
3:22
Comment From Guest

I have 2 male Grand sons non verbal autistic ages 8 and 5 already getting help. Do you think they will stay on the program?

3:22
Hi Guest it’s Lisa – the services that your grandsons are receiving should continue to be based upon their needs. It will be necessary to monitor their progress to make sure that their needs are being met.
3:24
Comment From Will

Why is Autism Speaks adopting a “wait-and-see” approach with regard to the outcome of this redefinition of what falls on the spectrum, and what steps are you prepared to take to insure that this change does not marginalize those currently considered to be high-fuctioning/Aspergers/PDD-NOS?

3:25
Hi Will. This is Dr. Dawson. We really don’t know yet how the new system will influence the ability to receive a diagnosis or services. The study discussed in the New York Times today is on a very small sample with old data and only included higher functioning persons. So, they are likely greatly overestimating the impact of the new system. We are designing and funding a study that will examine the impact of the new diagnostic system on diagnosis and access to services. We are also working with policy makers and insurance companies to make sure that people are not discriminated against when the new system is implemented.
3:28
Comment From Chone

I’m trying to ask a question in the chat but it isnt posting…. So here goes…. When can we expect our children to retested? And once retested will a new IEP need to done? Should we contact our schools and teachers now to find out? Personally I would really hate to wait until the middle of the next year

3:29
Hi Chone it’s Lisa – most likely you will still follow the current IEP, until your child’s annual review. Your child’s IEP should be developed based upon his or her strengths and challenges. As a parent you can always request an IEP meeting to review the goals and services.
3:29
Comment From Maria Lopez-Torres

in an article I read in the New york times it said that they are using a 1993 study for the changing the new criteria in the DSM, do you know if that is the only study they are going by or are they using any new study’s?

3:30
Dear Maria, the 1993 study referred to in the New York Times today came from a presentation that Dr. Fred Volkmar at Yale gave to the Icelandic Medical Association this week. However, that study has not gone through the peer-review process that research studies typically receive before publication. There is another study that was published in the June 2011 edition of the Journal of the American Academy of Child & Adolescent Psychiatry (JAACAP) by Mattila et al that reached a similar conclusion although the figures were very different. That same journal has a wonderful editorial by one of the members of the DSM-5 Neurodevelopmenatl Disorders Workgroup, Dr. Francesca Happe. Thank you for your question.
3:31
Comment From Vanessa in NC

What is behind the push to change the way ASDs are classified? I just don’t understand the rationale. Why lump everyone together? Our son’s needs, as someone with Asperger’s, are largely different than some of his peers at school who have a “classic” autism diagnosis and have more acute cognitive deficits.

3:33
Hi Vanessa, This is Dr. Dawson. The scientific rationale behind the changes actually are quite solid. The different distinctions among the subtypes (Autism, PDD-NOS, Asperger Syndrome, and so on) don’t map onto different causes or different treatment approaches. For example, a very similar treatment approach would likely be used for your son, who has Asperger syndrome, as would be used for a child with high functioning autism. The only distinction between Asperger syndrome and High Functioning Autism in the current system has to do with how much speech the child had by 3 years of age. It has been difficult for even expert clinicians to make reliable distinctions among the subtypes because these distinctions rely on people’s recollection of very early history. So, it does make sense to use a broad category – ASD. In addition, for each person, the doctor will need to describe the severity of symptoms, presence and degree of intellectual and language disability, and other factors, such as presence of medical conditions (e.g. GI distress) and genetic etiology (e.g. fragile X). While the new changes make sense scientifically, we need to keep in mind that this is not simply an academic exercise. We need to make sure that these changes don’t lead to people being denied the services they deserve.
3:34
Comment From Jason

Hello. My question is whether there are plans to look into the proposed changes to the diagnostic criteria with a more representative sample of children with ASD/Aspergers/PDD-NOS before the changes actually take place?

3:34
Hello Jason, your question about whether there will be any testing or validation of the proposed changes before they are implemented is a great one. The answer is yes, there will be a number of “field testing” studies conducted between now and the final publication date, which is expected to occur in May 2013. Thanks for participating in our chat today. Lisa
3:36
Comment From Guest

This change will effect only new diagnosis right? I mean you can’t take away a diagnosis? Can you?

3:36
Hello Guest (at 3:26). This is Dr. Dawson. The concern here is if a child (or adult) needs to be re-evaluated, they would be evaluated under the new system. We will be working hard to make sure that this won’t result in denial of services if the child no longer meets criteria for an ASD. This may need to be an advocacy effort state-by-state and we are commited to doing that, if necessary.
3:42
Comment From Tricia

It seems this is going to make it very difficult for families. My son has many of the service and he has come so far with them, but only with them. He has disabilities across the board, at least some in every area. Seems like kids like him who are improving are going to be left out in the cold if families are middle or low income.

3:42
Hi Tricia, This is Dr. Dawson. We don’t know yet what impact the new system will have. The study that was discussed in the New York Times article today likely overestimated the impact. If the new system does end up excluding some people from a diagnosis of ASD, it will likely be those with higher cognitive cabilities. If your child has disabiltiies across the board, he should qualify for services, even under the new system. That said, I agree that we don’t want to make obtaining services any more difficult for families. Families are struggling to get services as it is. Autism Speaks is commited to ensuring that the new diagnostic system doesn’t discriminate against people, especially those with low incomes or those with higher cognitive abilities.
3:43
Comment From Sue

I’d like to see some discussion about how these changes may impact adults with ASD. Please discuss how many adults with AS or HFA need significant supports to transition to independence and to maintain independence. Also,they may have high comorbidity of mood and anxiety disorders. These changes may take us backwards in our understanding of complexities of ASDs and quality of life in adulthood.

3:43
Sue, we share your concerns about how the changes may impact adults with ASD, especially those who fit into the more abled end of the spectrum. Your question about how many of these adults require supports for transition to independence is a good one. Unfortunately, this type of epidemiological research has not been conducted to date so we don’t have a good idea of what % of individuals meet this criteria. Quality of life during adulthood is a significant concern for us and one of the reasons we helped to develop Advancing Future for Adults with Autism, a consortium of organizations working to redefine the future for adults. Please link here for more info on AFAA. (www.afaa-us.org)
3:44
Comment From Peter Faustino

Hi Lisa and Geri – Thank you for doing this live chat. It’s clear that there is so much misinformation that it scares many people into worrying if programs and services will change. I wish the APA were doing more to educate the public about these changes. While I agree with everything you have said, do you think that pediatricians (often the first line of defense) will be hesitant to diagnosis autism and therefore slow early intervention? Right now the dx of PDD-NOS is used for young children showing signs of autism. With Early Intervention they are making tremendous progress. What can be done to share these unintended effects with APA?

3:44
Hi Peter it’s Lisa – this is a great question. We know how beneficial early intervention can be and we must continue to build awareness around the signs of autism so that children who qualify can get services as soon as possible. We must also continue to educate pediatricians as well as families about the signs of autism and the importance of early diagnosis. Thanks for joining us!
3:48
Hello Guest at 3:37, insurance coverage is an important issue to Autism Speaks and we don’t expect the DSM 5 changes to have a significant impact. All of the 29 state laws that require health plans to cover autism treatments have language in the definitions that apply to latest definition of autism spectrum disorders. So these laws will not be impacted by these changes. However, if a person does not meet the criteria for ASD under the new DSM, a doctor may choose or have to use another diagnostic code. Thanks for this question. Lisa G
3:48
oops. Here comes the question…
3:48
Comment From Guest

For some reason, these are not posting ot chat, so I will try one more time. Any ideas regarding the affect of these changes on insurance coverage for OT, PT, ST? I know that there have been great gains recently, with new laws put into use. I am a bit nervous that the new changes might affect our recent progress.

3:49
Hi everyone,
Your questions don’t automatically post because–fortunately–there are hundreds of you joining us.
3:49
We’re answering as fast as we can!
3:52
Comment From Michelle

How will this affect kids in the public schools seeking IEP services? I know in some cases, services are denied if they do not fit in the child’s specific diagnoses.

3:53
Michelle, your question about IEP services in public schools is a great one. Generally speaking, a diagnosis of autism is sufficient to permit a student to receive special educations services with an IEP under IDEA and we do not expect that to change under the new DSM-5 criteria. However, for those who no longer meet the new criteria it may become more challenging to qualify for an IEP. Of course, environmental accommodations are available through 504(b) if the student needs it. But make no mistake, we are very concerned that some students with autism may find it more difficult to get the support they need. Autism Speaks plans to closely monitor this situation and advocate where needed.
3:54
Comment From lisa

what is g.i. distress?

3:55
Hi LIsa, This is Dr. Dawson. Many persons with autism have associated medical conditions, such as sleep problems, gastrointestinal problems (GI distress), and seizures. Under the new system, the doctor will be asked to note whether or not the person has these conditions because they can greatly interfere with a person’s ability to take advantage of behavioral and educational treatments.
3:57
Comment From Dianna

One of my granddaughters is now a highly functioning autistic but that’s only because of my daughter and son-in-laws’ efforts and home-schooling. She will never be able to support herself or live alone despite all her advancements. I see a similar question was proposed earlier but if she is denied her medication she will definitely regress. It seems like it’s just another burden to put on our autistic population. She’s better, so she may not qualify when she’s reevaluated, so no meds, so she regresses, then reevaluated, back on meds, gets better, then fails revaluation, etc. Is this something you, Autism Speaks, will be trying to prevent? This cycle of passing evaluation / failing evaluation?

3:57
Hi Dianna, it sounds as if your daughter and son-in-law have done a great job advocating for your granddaughter. We will need to carefully monitor the effects of any possible changes in service. It will be important to keep data as to any changes in skills as a result of a change in service. We are working hard at Autism Speaks to provide tools and resources to improve the lives of all that are living with autism, including a grandparent’s support kit as well as a transition tool kit. Please visit the Autism Speaks website www.autismspeaks.org Thanks, Lisa
3:58
Comment From Jeff

Previous reports had mentioned that Asperger’s syndrome might be eliminated as a diagnosis entirely in the DSM V. Is this change part of what we’re discussing today?

3:59
Hi Jeff, This is Dr. Dawson. In the new diagnostic system, the subcategories of autism, PDD-NOS, Asperger syndrome, and so on, would be eliminated and all of these subtypes would fall under one umbrella term – Autism Spectrum Disorder. However, people may still want to refer to themselves as having Asperger syndrome, even though the diagnosis won’t be recognized formally by the medical community.
4:00
Comment From Beth

I would like to advocate in my state. How would I go about it? I am finishing my bachelors in Human Services and there is a great need for support here where I live

4:01
Dear Beth, we would love to have your help advocating in your state! Please visit www.autismvotes.org or contact our Government Relations department atadvocacy@autismspeaks.org. Thank you for your offer. We’ll let our AutismVotes people know! Lisa
4:03
Comment From JD

I am an adult with Asperger’s. Although I am high-functioning and have a masters degree, I am unable to maintain work. I have had over 30 jobs, so I live on SSDI. It is unlikely that I would be diagnosed with the Autism Spectrum Disorder in DSM-V. So would I lose my Social Security Disability Insurance?

4:04
Hi JD, This is Dr. Dawson. I am sorry to hear that it’s been so hard for you to maintain work. It is unclear whether the changes in the DSM would mean that you would no longer receive a diagnosis of ASD. However, it is clear that your disability is interfering with your ability to function and you could benefit from receiving support and services, such as job coaching. We want to make sure that people like you, who are struggling with symptoms of autism, still receive the support and services you need under the new system. We will work hard on your behalf. Please join us in our advocacy efforts.
4:06
Comment From Kathy

We’re a military family and I worry about how this might affect our son every time we move. Schools want to do their own testing and have documentation. How will this affect him and hopefuly protect him from being stripped of services?

4:07
Hi Kathy, as a military family please be sure to visit our support page for Military Families and Autism Advocacy athttp://www.autismvotes.org/site/c.frKNI3PCImE/b.5141983/k.A9E4/Military_homepage.htm. As you obviously know, military families move frequently and need to change schools. That said, your son’s diagnosis shouldn’t change just because you move. In fact, that might violate federal education law so you should talk with a special education advocate or lawyer to make sure. Please visit our Family Services Resource Guide if you need a referral in your local area. Also, we have a Congressional Briefing on the military and autism on Jan 31st in Washington DC. Please visit www.autismvotes.org for more information.
4:08
Dear Everyone, I am so sorry we are unable to answer all of your questions. Please keep in touch through our Facebook page and follow the Autism Speaks Official Blog site. We will be monitoring and writing about the DSM as this unfolds. Thanks again for joining us. Dr. Dawson
4:09
Thanks so much for joining us!! Lisa

Kerry Magro Covers ‘Joyful Noise’ Premiere

January 17, 2012 7 comments

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a graduate student at Seton Hall University, and is actively involved with our college program. Autism Speaks U is an initiative designed to support college students in their awareness, advocacy and fundraising efforts.

One night was all it took. My usual routine in college was to wake up, eat breakfast, go to school, and prepare myself for any fun, if not unexpected events that may come my way that day. Tonight was the exception that changed everything. I received an email from Autism Speaks that a famous movie Director Todd Graff (Bandslam) wanted me to help him with his screenplay for an upcoming motion picture called Joyful Noise! I thought to myself, “This may be one of the greatest moments of my life!”

So as a senior in college I had the chance to tie disability advocacy and love of theatre together by helping analyze a character with Asperger’ s syndrome for Mr. Graff ‘s movie, Joyful Noise. The following week I was reading over a screenplay and giving my thoughts and analysis of the character. A few weeks later I was having lunch with Mr. Graff to discuss the character in more detail and I was invited back to help with the casting of the character Walter Hill, a young man with Asperger syndrome. Then, last Monday, almost a year and a half later after the movie was filmed and largely marketed I got to see the Premiere of the movie at Gruman’s Chinese Theatre in Hollywood!

How did I get this lucky? How was this happening to me? This opportunity has touched my heart in a way that I can’t even explain. Without giving away any spoilers for Joyful Noise, which is now out in wide release everywhere co-stars Queen Latifah and Dolly Parton. Then there is the character I helped with Walter Hill (played by Dexter Darden). While reading the screenplay and then watching the film I couldn’t help but feel I saw a piece of myself in his character. I saw his struggle, could relate to his situation and could feel his pain. I then transcended into the whole theme of the movie which is about a Gospel Choir and this is when I fell in love. The music, the relate ability, I felt like I belonged. Like a part of me forever had changed because of the overall kindness of one man to give an adult with autism a joyful opportunity of a lifetime.

As a die-hard movie buff today I know that many people in the movie business would sometimes turn away from taking the time to present these opportunities but this wasn’t one of those times. I became a kid again; the kid that saw the kindness that could come from people. It made me learn that maybe if I wasn’t seeing the kindness in others than I had to just continue on my path to be that man, like Mr. Graff, who is looking at ways for a change for the better by presenting joyful opportunities for people like me.

The two biggest loves in my life have always been musical theater and basketball. When I was 6, my first love came to me. It started when I was going to Camp Tikvah; a special needs summer camp for learning disabled children at the JCC in Tenafly, N.J. At the end of the summer, the campers were teamed up to sing a song, usually to an audience full of parents. This was my first moment I ever got to sing with a group in front of a large audience. Our counselors would hold our hands while we would sing, encouraging us all to sing as loud and as clear as we could. When it was done I remember the tears that flowed down my eyes, being completely shocked and scared of what was happening.

You see, 2 years before at 4 and a half I was first diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified, a form of autism. During this time I dealt with many different sensory difficulties in regards to sound and touch. As you can imagine, because of the cheers and the sounds coming from that audience that day made me feel so uneasy, I didn’t know what to do…

On the way though something spectacular happened… I enjoyed where I was. No matter how frustrating, I remember how much I practiced my lines before and how much fun I had doing it. This is where I got my hook. It was on that stage that day I knew that my love of what I was doing would conquer whatever my struggles may have been. My brain was telling me no but my heart was telling me yes and that was enough for me. Even though communicating this to others was difficult my parents sensed it in me to give me another shot. Next summer I surprised myself by singing my heart out (most of it was yelling but I would take it). Everything started to connect itself it seemed after that. I contribute a great deal of where I am today to my early therapy in regards to speech, social interaction, body communication, and overall confidence to these days.

In college, my drama days ended at a halt based on not being able to find a balance for my school work and theatre. I understood these limitations though. School came first. I had the opportunity to bring some elements back later though when public speaking about my life with autism. A great deal of these two areas went hand in hand for me which led me to becoming involved in disability advocacy from then till this day.

I’m always amazed by random acts of kindness in today’s society. When I was younger I felt like these moments were more consistent and more genuine. As a college graduate who is running through the gauntlet trying to find work, I bask in the opportunity of having these moments. The opportunity Todd Graff offered me now almost a year ago was kindness in one of its truest forms.  I had the chance to do something I had only ever dreamed about doing which I never believed could be possible. Thanks Todd for making a dream come true!

As for the movie, it definitely is a crowd pleaser. The set pieces and musical numbers are dynamic. The acting is electric especially in regards to the chemistry between Queen Latifah and Dolly Parton on screen. In regards to the autism community, there are several autism related topics that are brought into focus that will leave very few dry eyes. All aside, by the end of the movie you’re almost guaranteed to leave with a smile on your face (and if you stay through the credits you’ll see a special thank you credit that I received too).

So, in the end, what I got from this movie was to learn that kindness, acceptance, love, and yes, joyful opportunities can make any dark corners shine bright for individuals with autism and without alike. I hope we can share this message with others.

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The Truth About Me

January 5, 2012 24 comments

This post is by Ryan Lord.

“To dream anything that you want to dream. That’s the beauty of the human mind.  To do anything that you want to do.  That is the strength of the human will.  To trust yourself to test your limits.  That is the courage to succeed.” – Bernard Edmonds.   “The Truth About Me” was realized a few years ago when my parents told me what a special part of me is…autistic; specifically, Aspergers Syndrome a type of high functioning autism. Accepting change and letting go of things dear to me are daily challenges of someone with Asperger’s Syndrome.   Making friends and learning the social cues necessary to sustain friendships is the hardest part of being autistic.  Despite everything that comes with being diagnosed with autism, some of these very challenges have shaped me, and pushed me to my academic best by giving me a true sense of who I am.

When I have a dear attachment to something even if I am finished with it I can never let it go.  A few days before I wrote this essay, my mom asked me to give my old Pokemon games to my little brother, because she thought I was too old for them. Even though I stopped playing it, I still had some attachment to those games because for me when I put such hard work into something and letting it go is very difficult. Even though most people would much more easily give up their bonds, I for one do not let them go so easily. This has made me a kind and gentle person and I am able to appreciate what I have and not take it for granted.   Another example of this is when I was in elementary school I knew a little girl named Kira.  Kira and I were the best of friends. Kira was very tomboyish and I was different.  We made the perfect outsiders that found each other’s friendship.  However, one day she moved away and I was down in the dumps. I was really sad when she moved away. It was really hard to let her go, I wished I could see her again. Most six year olds, would have easily found a new friend and moved on, but for me, it was devastating.  Aspergers allows me to appreciate and care for all things in my life. Everything is precious to me, from my little brother to all my best memories of the people who helped me in my life. This makes me grateful for what God has given to me.  So even though it is sometimes hard, I find what is good about this part of me and I continue to try and understand and appreciate it.

Over the course of my life I have been passionately interested in many different subjects. Trains, airplanes, and dinosaurs, are among the many subjects which I have come to study. I have a bountiful amount of knowledge in my head that I can recall at a moment’s notice.  I perseverate on these subjects so much, that sometimes it distracts me from my school work –  much to my parents chagrin. I learned about many different types of airplanes how they were designed why they were made. I went to air shows, watched videos on them, collected books and I learned so much about them. This passion of airplanes has steered in the direction of possibly considering majoring in aerospace engineering.

Ryan and his best friend Austin

Making friends has always been the hardest part of my diagnosis. I prefer my own company and I would consider myself a very shy person. I am the type that likes to have a few close friends rather than have a whole bunch of friends. I was never really good at making friends. But I have acquired some skills that allow me to interact with people. It took a class of “Learning to Make and Keep Friends” to help me in this department.  A part of this class was to invite a new person to your home and not play any video games.  It was a homework that was hard for me and even harder because electronics is such a big part of modern day socializing.  I got the courage to ask a boy in my neighborhood for a playmate.  This class and this play date was a life changing event.  My best friend turned out to be a friend I met from a homework assignment.  As I said before, I don’t need a bunch of friends, all I need, is one good friend and his name is Austin.

The truth about me is no different from anyone else’s truth. We all have things to overcome; we all have to have the courage and will to succeed. My diagnosis makes me no different from anyone else, I choose to think, it sets me apart makes me strong. “Anyone can give up; it’s the easiest thing in the world to do.  But to hold it together when everyone else would understand if you fell apart, that’s true strength.” – Ella Fitzgerald. This is a quote I believe in.  My journey has never been easy but along my way, I have looked at my gifts I have and marveled at them.  I have looked at all the things that would have surely hindered my progression but instead, they have served me very well.  My diagnosis as it turned out gave me my best friend, it provided me with honors in an early college prep program and has helped shaped the caring, passionate, gentle person I am today.  Aspergers has given me a strong sense of who I am and and incredibly strong sense of determination and self esteem.  There will always be things that I am good at; there will always be things I will never be good at.  I take those in stride and try not to miss a beat, or the boat to life, or the boat to life’s next big adventure or challenge.

Autism’s “Fly-Over” Population

January 4, 2012 72 comments

This is a guest post from Mark L. Olson in response to the New York Times article, ‘Navigating Love and Autism.’ Mark lives in Henderson, Nevada where he is the only parent of a 16 year old daughter with autism; Chairperson, Community Living & Employment Subcommittee, Nevada Commission on Autism Spectrum Disorders; and, President & CEO, LTO Ventures, a 501(c)(3) nonprofit company developing live/work/play communities for adults with autism.

I read with mixed emotions the December 26th New York Times article “Navigating Love and Autism” about Jack and Kirsten, a young couple with Asperger’s Syndrome discovering how to have a relationship with each other.  The romantic in me found their story inspiring and hopeful.  But as the only parent of a teenage daughter with autism, another part of me felt frustration about the lack of attention to and help for autism’s “fly-over” population — the huge group of teens and adults who are often nonverbal, may never expect to live independently, yet deserve the chance to choose the kind of life they want to live.

“Fly-over” is a term I heard often growing up in the Midwest and attending University of Kansas.  It refers to the majority of the US between the East and West Coasts that airline passengers look down on when they fly over.  It also refers to a mindset in the media that the most valuable audiences are located in New York and Los Angeles, and to which their programming overtly caters.

Autism is a broad spectrum disorder just as the U.S. is an expansive land mass and melting pot.  A favorite expression in our community is that “if you’ve met one person with autism, then you’ve met one person with autism.”  Our community and efforts to help persons with autism benefit from all the awareness we can generate, but sometimes it feels like that attention falls largely onto two ends of the spectrum.

At one end, thanks to organizations like Autism Speaks and others, kids as young as 18 months benefit from more research dollars than ever directed toward finding the cause of and a cure for autism, while insurance mandates are in effect in the majority of states that emphasize funding for ABA therapy and early intervention, diagnosis, and treatment.

At the other end of the spectrum are the Aspies and HFA teens and adults like Jack and Kirsten who are the focus of media coverage, movies, federal programs such as Medicaid and the President’s Year of Community Living.  They are also the primary beneficiaries of the Protection and Advocacy (P&A) Network created by Congress and self-advocacy organizations bent on eliminating all barriers to living and working exactly the same lives as “typical” Americans.

But what about the fly-over population?  My daughter is one of them and we live this struggle every day.  (I also run my own 501(c)(3) nonprofit company developing live/work/play communities for adults with autism and chair a subcommittee for the Nevada Autism Commission on community living and employment.)  I see this issue from many perspectives and I’m increasingly disheartened by the chasm of resources and choice expanding between our community’s newest affected and our most capable.

My daughter is 16 and nonverbal, although she can hear and understand some of what is said to her.  She’s not high-functioning enough to enjoy true independent living, and diagnosed at age 12 she was too old to benefit from aggressive early intervention protocols.  I expect she will stay in her special needs school until her IDEA eligibility runs out and we are planning for guardianship now. But I’m also 39 years older than her and while I like to believe I’m immortal, I’m pretty sure I’m not.  So that means planning for where she is going to live, what kind of work she might do, and what chance at a social life she can expect.

Let’s start with housing options.  My daughter deserves the right to choose any residential setting in which she wants to live.  It is estimated that 85% of adults with autism live with parents or a family member until they can no longer be taken care of.  As with many kids with autism, there are daily living skills she does well, and others (bathing, feminine hygiene, house cleaning) that are a challenge. Some disability self-advocates argue her only option outside of my home should be in her own apartment or home no closer than 1000-1500 feet from any other disabled person.

She can’t live alone in a scattered site apartment because she doesn’t know how to cross a street safely, or how to avoid neighbors who might bully, exploit, or abuse her.  It’s a ludicrous notion to expect her neighbors to be her “it takes a village” safety net.  She can feed herself, but she cannot use a stove or microwave to prepare a hot meal.  A setting where she could go to eat or pickup meals of her choosing would be ideal.

A planned residential community optimized to accommodate her autism such as a disability-based campus or farmstead would be a great solution.  Unfortunately, Medicaid, certain self-advocacy groups and the P&A Network are doing everything they can to deny her freedom of choice and impede development of innovative settings. (Read more at “Choice v. Olmstead“)

Now let’s talk about work.  My daughter is blessed with exceptional physical strength and decent gross motor skills.  With supervision she can do fine motor projects and follow multi-step instructions…for a while.  But she cannot speak, read or write.  She will never be able to pursue competitive employment on the open market, but that doesn’t mean she can’t earn a minimum or higher wage.  A work environment created to accommodate and develop her abilities would be ideal.  But again the same forces are at work to eliminate these optimized settings as discriminatory.

Would she like a social life?  A relationship like Jack and Kirsten?  I don’t know.  I do know she is highly sociable and enjoys the company of affected and typical kids and adults.  A setting where she could freely walk around, meet up and hang out with persons like her and enlightened members of her surrounding community would be ideal.  But transportation, availability of programs, and lack of funding marginalize anything except a public park or shopping mall.

Jack and Kirsten’s story is informative and heartwarming.  But as we enter 2012, I implore the autism community, media, government and especially those self-advocates who resist progressive thinking and innovation, to not forget the impact they have on our “fly-over” population.  Their story deserves to be told too.  They deserve the right to choose how they want to live.

———————————–

For more information:

LTO Ventures

Community Living & Employment Subcommittee, Nevada Commission on Autism Spectrum Disorders 

Weekly Whirl – Our Favorite Video Clips of the Week!

December 16, 2011 1 comment

If anyone knows how hectic life can get – WE DO! That’s why we have created the Autism Speaks Weekly Whirl to fill you in on all of the highlights of the week! The last thing we want is for you to be left out of the loop! Please share with friends and family to spread the word about all of the exciting things going on in the autism community. Keep in mind, these updates aren’t limited to Autism Speaks — we will be featuring news from across the community.

This week we would like to bring you our favorite videos from the web! Enjoy, enjoy!

Surprise from Daddy!

Dad surprising his son at school after returning from Iraq


Touching Video! Autistic Man Gets Help Singing The National Anthem

There is still great hope in humanity, and this video shows that when the entire crowd at Fenway Park comes to the aid of an autistic man singing the National Anthem.

 

A 5-Year-Old Autistic Boy and His Piano

Ethan Walmark plays “Forget You” by Cee Lo Green. Credit Anthony Karge

Inside Out: My Life With Asperger Syndrome

I struggled with undiagnosed autism for nearly 25 years. My diagnosis has enabled me to embrace my individuality and move forward.

James Hobley – Britains got talent semi final dancer

Britains got talent 2011 James Hobley Dancer performs in the semi final. The semi final shows is live to the TV Audiences. Britain looks for it’s new variety act to perform in front of the royal family at the royal variety performance. Being judged by David Hasselhoff (The Hoff), Amanda Holden and Michael Mcintyre and mow returning Simon cowell.

10 Providers for Teens with Asperger’s – Recommendations from Parents Who Have Been There

October 20, 2011 18 comments

Over 700 parents of teenagers with Asperger’s Disorder have registered on MyAutismTeam.com – a site where parents of children on the autism spectrum connect, share recommendations of local providers, and share tips with each other.  That’s about 20% of all parents on the site.   These parents have spent years building up their “autism teams” – all of the providers needed to help their children develop and thrive.  They have endured a lot of “trial and error” to find what therapies (and which providers) work best for their teens.  We looked at all the parents of children with Asperger’s Disorder on MyAutismTeam, narrowed it down to those with teens on the spectrum, and read through their stories and teams.   Summarized below are five of the more common, and five more unique, types of providers on these parents’ teams.

5 Common Team Members for Teens with Asperger’s

5.         Pediatrician – Every child needs one, but finding one with some understanding of autism and sensitivity to the needs of a child on the spectrum is important.   Autism was not nearly as recognized 10 years ago (when many of these parents were first seeking answers) as it is now, so some parents have had to “break in” their pediatricians over the years – sticking to their guns and insisting on a referral for a diagnosis when the pediatrician has told them something like, “Speech delays are normal for a boy of his age”.   You may not find a pediatrician with formal training in autism, but it’s helpful to find those that regularly see kids on the spectrum.   If you need help, there are over 670 pediatricians marked “Autism-Yes” on MyAutismTeam (meaning another parent or our partner, Autism Speaks, has indicated that the pediatrician is experienced working with children on the spectrum.)   If you can recommend a fabulous pediatrician, please find them on MyAutismTeam and add them to your team.   A word from you can save another parent months of “trial and error.”

4.         Psychiatrist / Psychologist – For initial and ongoing evaluations that not only help guide the types of therapies you pursue for your child, but also help in securing necessary services from schools and insurance companies.  A psychiatrist has a medical degree and can prescribe medications.  A psychologist has a doctoral-level degree in psychology.  (Note: Many parents report seeing a Neurologist as well.)

3.         Dentists – It’s hard enough to bring a neurotypical child to the dentist every six months, but to a child with Asperger’s and sensory sensitivity, a trip to the dentist can be daunting (even for a teen).  That’s probably why so many parents list a dentist as part of their Autism Teams.    Finding a dentist that is sensitive to those needs and skilled at working around them is a big deal.   Some parents seek out dentists that put their patients under anesthesia to make the process go more smoothly.  Check out Autism Speak’s Dental Tool Kit for more tips on making visits to the dentist office less stressful and more productive.

2.         Early Intervention Therapists – When asked “What therapies worked best for your child” more parents respond that ABA, occupational, social integration and speech therapy were the most effective in helping their children make progress.    They seek these therapies out through their IEPs at school, privately if they can afford them, and through other local resources where they exist.  One of the most common challenges parents discuss on the site is helping their teens build social skills and relationships with other kids their age.   BethComptonMathie ofMorristown,Tennessee explains, “My son used to have friends but the older he gets, the harder it gets. [He] is focused on video games.”  She has tried social classes over the summer and her son now works with a psychologist who visits the school each week from the same summer program.  Other parents have reported that occupational therapists have vastly improved their child’s handwriting.

1.         Respite Care –  Every parent needs a break of some sort.  A time to run an errand , do something for themselves, or just recuperate.  Many parents list the local chapters of Easter Seals as an invaluable resource for finding respite care and preserving their personal sanity.   As one veteran mom responded on lessons she’s learned, “I wish I knew how important it was that I make myself a priority. It’s the little things that I carve out in MY life to self-nurture that give me the strength to live, laugh and love more deeply today and be the best parent I can be.”

5 More Unique Providers You May Not Have Considered

5.         Martial Arts Instructors – Martial arts from an understanding instructor can promote focus, discipline, self-confidence, and physical stamina.  Numerous parents on MyAutismTeam start their child in martial arts classes at age 5 or 6.  In some instances it’s an activity that dads do with their children.

4.         Horseback Riding Therapy –  Occupational therapy through horseback riding can be a wonderful experience for kids with special needs.   CaddysLady of Vancouver Washington lists two such providers on her autism team.

3.         Attorneys – Sometimes attorneys specializing in special education law have been helpful for parents struggling to get the appropriate services from their school district or in securing coverage of key therapies from insurance companies.    One New Jersey mother of a 20 year old with Asperger’s has an attorney to help secure the things the services that come after the teenage years.  “After 2 years of fighting for Transitional Education, and winning in Court, my son has almost completed his first 30 days in a specialized school.”

2.         Piano Lessons – Quite a few parents have piano teachers on their autism teams.    I think a mother of 5 year-old (not a teenager) with Asperger’s, Sharon Esch ofAlbuquerque,New Mexico, sums it up perfectly.  “Music seems to be a great therapy for [my son], giving him an opportunity to work on fine motor skills in a way that doesn’t seem like work.  Also, I think he enjoys the immediate response of hearing music when he plays, something he controls himself.”

1.         Barbers – Like the dentists, every child needs a barber, and every child on the spectrum needs a barber who “gets it.”   For a particularly inspired and touching account of the bond between one teen turned adult on the spectrum and his barber read Laura Shumaker’s brilliant piece, “Mentor, Helper Friend.”

Who’s On Your Team?

You can see all of the parents of children with Asperger’s Disorder on MyAutismTeam and read through their stories and see their teams.  You can also post on their walls and ask them questions.  If you have fabulous local providers you can recommend to other parents just starting out on this journey, we hope you’ll join MyAutismTeam and share your wisdom!

Posted byEric Peacock, GM of MyAutismTeam

@ejpeacock

Family Services Office Hours – 10.05.11

October 7, 2011 3 comments

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.

Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

2:32
Hey Everyone! We will be on in 25 minutes! Hang on!
2:57
Just getting ready to go!
3:02
Welcome to Office Hours! Family Services is taking questions and we are here to help offer resources and guidance!
3:03
Comment From Jennifer

My son is 4 and has PDD-NOS. His teacher says she does not see any reason why he can’t be in a regular Kindergarden next year. Is it possibe that his current diagnosis can improve…and then regress as he gets older?

3:04
Hi Jennifer! Children with autism progress at different times. Make sure that he has an IEP in place and be sure to measure his goals and objectives to make sure that he is infect making progress!
3:05
*in fact
3:06
Comment From Guest

My 18 mo old son has just been diagnosed. I’m having a hard time finding treatment options. The state (WI) funding has a 2 yr waiting list and our pivate insurance is self funded so they don’t have to do much. He is in speech therapy 3 x a week and occupational 1 month. What else can I do? He was rated as moderate on the scale.

3:08
Hi Guest! That is great that he is already in those therapies! Early intervention is key! Early Intervention is Federally mandated. Please check out our Resource Guide for your state to find a facility near you. Here is a link!http://www.autismspeaks.org/resource-guide
3:08
Also, here is our 100 Day Kit for further assistance!http://www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:09
Comment From Dawn

Have you heard of Irene law and how it effects grade advancement from third grade forward?

3:10
hi Dawn, I haven’t heard of Irene law. Can you tell me about it?
3:11
Comment From Kristen

I posted earlier Gabe is my 18 month old. With the research I have been doing I have read that there is a higher insidence in siblings. I have a 4 year old, no concerns there, but we also have a 2 month old. How early can you really look for signs of autism?

3:12
Hi Kristen! Clinicians are diagnosing autism earlier in earlier. It is always helpful to learn the signs. Here is a linkhttp://www.autismspeaks.org/what-autism/learn-signs
3:12
Our Video Glossary should also be helpfulhttp://www.autismspeaks.org/what-autism/video-glossary
3:12
Be sure to work with your clinician to follow the progress of your children and to discuss any further concerns
3:15
Comment From melina

I am in England and my 4 year old son has all signs of classic autism, but i cant get a pediatrician to give a diagnosis. any suggestions?

3:16
Hi Melina. You may want to ask your child’s doctor for a referral to a developmental pediatrician or a neurologist. It is very important that you get the diagnosis sooner rather than later. You are doing the right thing by seeking further clarification about your son’s status!
3:17
Comment From Jessica

My son is 4 years old and was diagnosed with autism at the age of 2. He has a HUGE problem with eating his poop and playing in it! I am desperatly asking anyone to help me help him! Thank you

3:18
Hi Jessica. I’m sorry to hear that you are having this difficulty. This is important information for your son’s treatment team to know. You can start by talking to your pediatrician or your son’s IEP team. You should not feel alone with this problem, there are plenty of other parents who have experienced this! Talking to professionals is a key first step to understanding what is causing this to happen.
3:20
Comment From melina

i tried that and the gp who only met my son once for 5 minuets said he couldn’t be autistic because he sat on a chair

3:20
Hi Melina. It is very important that you find a gp or pediatrician who will listen to your concerns and help meet your needs. Do not give up, you are doing the right thing!
3:21
Hi Janine, it important to work closely with your daughter’s clinician and get the support you need to in order to access services.
3:23
Hi Guest and Adrienna! We have a very extensive resource guide that you can use to help find therapists in your area. Simply go towww.autismspeaks.org/resource-guide, click on your state and search among our many categories. Enter your zip code and expand the radius so you can find all possible options in your state.
3:23
Comment From Adrienna

My 3 yr old has been diagnosed with autism and I was wondering if you knew of any sites where I could find behavioral specialists or obtain behavioral intervention in the state of KY?

3:23
Comment From Guest

My son will be 4 next month and is currently recieving Speech and OT therapies but they are now recommending ABA therapy which I am told is very costly, are there any resources in opr around Charlotte,NC that I may check out for this or something else that may assist him?

3:23
Hi Guest and Adrienna! We have a very extensive resource guide that you can use to help find therapists in your area. Simply go towww.autismspeaks.org/resource-guide, click on your state and search among our many categories. Enter your zip code and expand the radius so you can find all possible options in your state.
3:24
You can also find local autism organizations in the resource guide in your state that may have more information for you.
3:25
Comment From Linda

school issues…. getting a one on one aid when starting to help the transition. school wants him in school for a couple weeks before an iep can be set up to see if he needs one. we are afraid to start him without one, afraid of maybe making it very hard as he has not had to do any real transitioning and we feel if he has help for a little while that he may not have to continue to have an aid for a long period. he is high functioning and just needs someone to help him get a start. he is 7 and already a yr behind because of our issues with school.

3:26
Hi Linda! You have the right to call an IEP meeting at any point. You have to be sure to advocate for yourself and child. We have several resources that may be helpful to you. First off, our IEP Guidehttp://www.autismspeaks.org/sites/default/files/gp_iep_guide.pdf
3:27
We also have the School Community Toolkit to assist members of the school community in understanding and supporting students with autism. Here is a linkhttp://www.autismspeaks.org/family-services/tool-kits/school-community-tool-kit
3:28
Comment From donna

my 3 year old son is in the process of being diagnosed and i am having trouble getting his therapy back since he turned 3. he was reciving early intervention and speech therapy but they told me they had to stop because of his age.

3:28
You can also search our Resource Guide for Advocacy in your area http://www.autismspeaks.org/resource-guide
3:28
hi Donna, I am curious. Were there transitional services put in place?
3:30
You early Intervention treatment team should be able to help you make a transition to school based services.
3:32
Donna, you may also want to look up state information in our Resource Guide. Click the categories “State Information – Early Intervention” and “State Information – Preschool” to learn more.http://www.autismspeaks.org/community/fsdb/search.php
3:32
You should also check out our “Your Child’s Rights page”http://www.autismspeaks.org/what-autism/your-childs-rights
3:32
Comment From Courtney

Is there anything comparable to ABA therapy? What can I do to assist him in behavior modifications?

3:32
Hi Courtney! We have a list of various treatment options on our website on the What is Autism page.http://www.autismspeaks.org/what-autism/treatment You can see a list on the left side of the page and read more about each.
3:33
Comment From Andrea

Donna my daughter was two when she was diagnosed and there was a lapse in service when she turned 3 because its defferent providers, but as long as he’s been evaluated by the school district then you’re on the right path.

3:34
Comment From Jessica

anyone know of good neorological doctors in the Indiana area?

3:35
Hi Jessica. Check out our Resource Guide and you can search for lots of resources in Indiana! www.autismspeaks.org/resource-guide
3:35
Comment From Nichelle

My autistic son is 5 and will be 6 next week he is in kindergarten and he has a problem with transitions. He really loved his teachers and friends from pre-k but is really having a hard time in kindergarten so far. His teachers send me notes basically everyday about his not paying attention or disturbing the class or throwing a mouse across the class because he didn’t want to get off the computer. Lately he has been saying shut up at home and school and when he does not get his way he says stupid mom, dad or the teacher. I don’t know what to do. Please help.

3:36
Hi Nichelle! You are right to have these concerns. You are doing the right thing to address these problems early. You should call an IEP meeting with your entire team to address these behaviors. You should not feel alone in addressing problems that he is having at school or at home.
3:37
Check out our IEP guide to learn more about how to work effectively with your IEP team.http://www.autismspeaks.org/what-autism/your-childs-rights
3:37
Your son is reacting and there is a reason for that. Part of the IEP team’s responsibility is to better understand the reason and what the function of those behaviors are for your son.
3:38
Comment From Charteisha

My son is 14 years old and had autism. He has been aggressive at school…hitting students and the teacher. This is his first year at this new school..high school. I am already becoming concern because the school called me yesterday to pick him up because he was aggressive. I don’t want him to be kicked out of school. I plan to increase his medication…Risperdal to hopefully get better control of his behavior. Any other suggestions?

3:38
Hi Charteisha! We are sorry to hear you are having difficulties with your son. This is something your IEP team and a psychiatrist should address to understand the underlying causes.
3:39
We have a great transition tool kit for parents just like you of individuals with autism ages 14-22. It is a guide to help walk you through this often difficult time. We can send it to you for free! Just fill out the form at the link below:http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
3:40
I know this may take some tiime but it is so important to have good communication with his teachers and the others who are helping him at school.
3:41
Comment From Amy

I made a comment on how to get a person out of a local trainging center. This person is 40 years of age, counts, knows his color, ABC’s, feeds himself, dresses himself and talks with people. He has Autism and that’s the only reason he is at this trainging center. I would like for him to come live in my home and have a more normal life. Can you help me????

3:42
Hi Amy. Our resource guide has lists of attorneys and advocates that will be able to help you advocate for your friend/family member. Click on your state and then attorneys or advocates and type your zip code. Be sure to expand your search!www.autismspeaks.org/resource-guide
3:43
Hi Adrienna, There is a list of agencies in our resource library.
3:43
Comment From Adrienna

I have tried to look for any financial assistance through on your resource page and everytime I type in my area code and various distances I get nothing. Is there another site I can go to for finding financial assistance?

3:44
You may also want to contact local autism organizations listed in the Resource Guide who may know of other funding sources in your area.
3:44
Comment From Gillian

My son is 2 1/2 and was diagnosed with autism/pdd-nos at the age of 18 months. My husband does a lot of online research and lately all of this information keeps popping up about a link between autism and lyme disease and I wanted to get other mother’s opinions and/or personal experiences with this line of thinking

3:45
Hi Gillian. We are not aware of any relationship between Lyme disease and autism. If you have concerns, you should ask your pediatrician about it. You can also emailresearch@autismspeaks.org to get answers from our science team.
3:46
It is important for all of you to remember that while the internet has lots of perks and is a great source for information, please be careful with what you read, especially about autism. There are a lot of different theories out there, many from untrusted sources!
3:46
Comment From donna

is there any where i can get help to help my family to be able to communicate with my son better?

3:47
Hi Donna! We are in the midst of creating family support tool kits. We had a grandparent guide come out two weeks agohttp://www.autismspeaks.org/family-services/community-connections/celebrating-grandparents
3:47
And now we are working on kits for parents, siblings and friends. They should be out in the next two weeks!
3:48
We also have lots of books in our Resource Library for siblings, parents, and other family members. You can check out our books list at http://www.autismspeaks.org/family-services/resource-library/books
3:51
Comment From Erin

Where does a single parent of a 4yr.old pdd-nos w/3 other children get help for care?No family or friends to help and I work full-time.

3:52
Hi Erin. I am sorry to hear you are having difficulty finding care for your children. We did a Community Connections a few months back that provides lots of information and tips about finding effective respite care. http://www.autismspeaks.org/family-services/community-connections/respite-care-and-autism
3:54
Comment From Guest

My son is 6 and just got a PDD-NOS diagnosis this past summer…Before that he had a ADHD diagnosis which the school did not buy….But NOW they don’t seem to buy the PDD-NOS either?! What can I do to make sure we are all looking at him through the same lense for his next IEP meeting

3:55
Hi Guest. It is important that everyone who works with your son understands his strengths and limitations. This may be done by doing assessments of his different skill sets. The IEP must include lots of assessment data and information about your child’s status.
3:56
The areas of difficulty and strength are much more important than the actual diagnosis since every child on the autism spectrum is so different!
3:57
So it is important to make sure the IEP team and other professionals involved understand all they can about your son. You can read our IEP guide here:http://www.autismspeaks.org/family-services/community-connections/respite-care-and-autism
3:57
Comment From Erin

Is there a possible link between Ulcerative Colitis and Autism?I was diagnosed with UC after the birth of my daughter

3:58
hi Erin- Please email research@autismspeaks.org with your question. They will have articles or recent studies to answer your question.
3:58
Thank you everyone for joining today! Be sure to check out our newest project- a Health and Wellness site that includes lots of tips and resources regarding fitness, sleep and nutrition so your family member can be as healthy as possible!http://www.autismspeaks.org/family-services/health-and-wellness
3:59
We look forward to hearing from you all again next Wednesday at Office Hours! And as always, if you have any questions, please don’t hesitate to contact our Autism Response Team at 888-AUTISM2 or familyservices@autismspeaks.org

In Their Own Words – I Want My Money Back

September 29, 2011 94 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

At the tender age of fifteen, I saw my first psychologist, a stern, elderly man who smelled like a second hand bookstore. His full, wiry beard, was speckled with white and gray, as if it had caught the contents of an overturned ashtray. It fell past his chest, disappearing beneath the edge of his massive, oak desk. I wondered if it reached his toes, and leaned forward awkwardly, hoping for a revealing glimpse.

“Young man,” he said, startling me. “Tell me why you’re here.”

“Do you shampoo that beard?” I asked.

“Excuse me…”

“You look like Charles Darwin.”

He leaned back and stared at me, mildly annoyed, as if I was a fly he had noticed swimming in his coffee. “Your family is concerned by you behavior. I believe…”

“I commend you, sir!” I interrupted. “The world is experiencing a shortage of truly magnificent facial hair; you’ve got the best beard I’ve seen all year! You know who else had a good beard? Sigmund Freud. Are you a Freudian psychologist?”

“Young man, let’s try to stay on topic.”

“Right, beards… Nobody could beat Tolstoy’s beard. Now that dude had a beard!”

“Young man!” he bellowed, startling me again.

“Humph… Young man,” I muttered. “Just ‘cause I can’t grow a big fancy beard…”

The psychologist lifted a notepad from his desk and began scribbling absentmindedly. “I’m afraid,” he said, “that you have a very serious case of Bipolar Disorder.”

“Huh? How do you know? I’ve only been here for five minutes!”

“Trust me; I’ve been around a long time.”

“But… I’ve never had a manic episode, and the DSM-IV clearly states…”

“You, my dear boy, are an upstart!” the psychologist fumed, a fat, blue vein trembling in his forehead.

“Ok, chill dude… I’m bipolar. Whatever you say… Beethoven was bipolar. I don’t think he had a beard though…”

For as long as I can remember, people have been trying to figure me out. Other parents told my mother and father that I was clearly lacking discipline. Teachers refused me an education unless I was prescribed enough Ritalin to keep the Rolling Stones touring for another century. Pastors believed I was possessed, and prepared to wipe my projectile vomit from the pews when I trotted into Sunday morning service.

Hyperactive, precocious, and more than a little odd, I was truly a handful. Snakes, snails, and puppy dog tails? If only my mother was so lucky. Someone must have littered my gene pool with pixie sticks, happy meals, mountain dew, and an Encyclopedia Britannica.

“There’s something wrong with him,” my mother would sob. “He’s allergic to people! He won’t sit still, he won’t listen, he’s always hurting himself, and he’s smarter than my whole graduating class put together!”

I treated other children like overgrown action figures, ordering them about, an infantile Cecil B. Demille directing a playground epic. “C’mon Tina, say that line again, and this time, say it with feeling! Put down the Polly Pocket and explain your character’s motivation!” Eventually, my peers developed their own interests, and I was left to wander the playground alone, thinking of Ghostbusters, Power Rangers, and… existential motifs in Russian literature.

“Scotty’s latest obsession,” was a phrase used regularly to describe the most current of my all encompassing interests. At twelve years-old, I had forgotten more randomly collected information than most people will learn in college. My obsessions gradually became less and less age appropriate as my focus narrowed; retired barbiturate and amphetamine combinations used as antidepressants in the 50s and 60s; sadomasochistic undertones in the cinema of Joseph von Sternberg; and the impact of synesthesia on the literature of Vladimir Nabokov; to name a select few.

I wasn’t interested in girls, or boys, for that matter. My parents bought me a Mustang for my sixteenth birthday – I drove it all of three times. I wore the same few outfits day after day. I was diagnosed with ADHD, Generalized Anxiety Disorder, Borderline Personality Disorder, Major Depressive Disorder, and, of course, Bipolar Disorder.

True, I was rather emotionally volatile, but this was greatly exacerbated by the constant chaos which engulfed my family. My father had played major league Baseball for the Seattle Mariners, and was absent for the majority of my childhood. As a result of his career, my family moved dozens of times before I was ten years-old. When I was twelve, my eight year-old brother fell 31 feet from a ski lift, nearly dying.  If that wasn’t enough, the routine MRI, which followed his accident, revealed a tumor in his brain. He  later underwent a dangerous surgery to have it removed. My adopted sister was diagnosed with leukemia at three years-old. My father required an open heart surgery to repair a leaking mitral valve.

Though thoroughly weary of hospitals, I was typically content to find a quiet corner of the waiting room and study Italian Neorealism – “Scott, your sister is dying, no one wants to hear about Federico Fellini!”

Psychiatrists pumped me full of every neuroleptic in the book (Adderall and Celexa, medications which I am now benefiting enormously from, were withheld because they are contraindicated in cases of Bipolar Disorder). I was as incoherent as Mel Gibson at happy hour, and experienced agonizing side-effects which led me to attempt suicide.

My sister died at ten years-old, after battling leukemia for seven years. I was holding her hand when she passed. I was fed up with life, convinced that I was a waste of oxygen in a cruel and meaningless world.

I began heavily abusing street drugs, playing intravenous Russian roulette with every pill and powder I could get my hands on. I would wake up on the cool linoleum of my bathroom floor cursing my indestructibility – I was still alive.

I spent time in mental hospitals and treatment centers. Luckily, my obsession with drugs had a shelf life, as all my obsessions do. I lost interest and moved on.

At 24 years-old, my girlfriend suggested that I might have Asperger Syndrome.

“Huh?”

“Scott,” she said, “you can recite every line of the movie Cabaret, yet you haven’t seen it since you were thirteen. You just listed every currently marketed benzodiazepine in alphabetical order, apparently for my entertainment.

“So…?”

“You’re a walking dictionary but you can’t remember your own address. Not only can you not drive, you can’t figure out which of the three cars parked in your driveway is mine. I think you should see a doctor.”

“I’ve seen them all.”

“Scott…”

“Ok… ok… Wait, I’m autistic? I want my money back…”

How did I manage to live a quarter of a century without being properly diagnosed. I’m autistic – duh!

Discovering my autism has been my saving grace. I will never forget the overwhelming emotions that poured over me when I first read about Asperger Syndrome in the DSM-IV. I’m not broken. I’m not bad. I’m just autistic and that is alright!  Since being formally diagnosed, I’ve come to understand and embrace myself for the remarkable person I am. In a few short months, I’ve become a prolific autistic writer, with a column appearing this week on wrongplanet.net, a potential contract with a publishing company, translations of my articles in Hebrew, public speaking engagements, and an opportunity to travel to San Francisco to help Alex Plank and crew film a documentary on Hacking Autism.

Somebody pinch me!

Even when I had given up on myself, God had a plan for my life. I now have the opportunity to use my gifts to spread awareness of autism spectrum disorders. If sharing my experiences spares other autistics from going through the pain of living undiagnosed, my struggles will not have been in vain.

My diagnosis has been my vindication and my inspiration. I want to shout it from the rooftops; “I’m autistic!”

Well, better late than never.

Seriously though, I want my money back…

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Hope Found in the Light

September 23, 2011 6 comments

This post is by Tara Washburn, an adult with Asperger’s Syndrome. She says, ‘I was diagnosed with Asperger’s Syndrome at age 28. I have spent the last 5 years coming to understand where I am now and what was happening inside of myself when I was a moderate-low functioning child. This is Autism from my perspective – Autism from the inside out.’ Visit Tara’s Blog, ‘Hearts that Feel‘ for more.

Autistic individuals are often put into a spectrum. This spectrum is an indicator showing how well your loved ones are able to adapt in society. I also have a spectrum, but it has a different meaning.

Everyone is on my spectrum. There are many that are on the low end of your spectrum that are on the highest end of mine. There are many who are successful (according to the world) who use manipulative means to make circumstances suit them. These people are on the low end of my spectrum. My spectrum measures function in lies or truth. It measures from despotic darkness to liberating light.

I do not pretend to be, or comprehend, the light. But I’d like to share my understanding of it and how it relates to individuals that are placed on your spectrum.

The light of truth is blinding when we are not used to seeing it. For example, imagine that you are outside on a dark night and suddenly a brilliant flash of lightning streaks across the sky. Initially you flinch and are filled with both fear and wonderment. So much is determined in that flash of light. Either you cling to the fear of the lightning, so brilliant, powerful and scary, or you cling to the wonderment, so new and somehow enticing.

Likewise, in the end, we either choose the fear that leads to hatred and suffering, or we choose the courage that leads to love and healing. There is no other path, really. All choices ultimately end in either place: we cling to the darkness or we embrace the light.

There are several ways that the world can harm to your loved ones. There are selfish people who take advantage of others, evil people who molest and make afraid, misguided people who unintentionally harm, clumsy and careless people who maim by mistake. Yet, focusing on situations that bring harm, and the individuals responsible, will not bring light to those who are seeking it. It may “take down” one more institution or individual, but it will not stop the abuse, lies, greed and corruption at the heart of the matter. If you fight them using their own weapons, you lose. Period. You cannot experience a victory for light using darkness.

I have often seen homes that cling to fear – the pain and anguish never seem to vanish out of their lives. I have seen homes that embrace truth – the healing and light seem to permeate not only those who live there, but all who enter. When I enter this kind of home I leave feeling as though I am in Heaven for a moment. I have seen other children on the “spectrum” who are likewise affected.

If you truly want to help your child, forgive those whom you feel have wronged your precious one, no matter the motive and reason. Forgive, love and you will see your child light up. The next time he begins to rock and cover his ears, running from darkness, look inside, find light and show him that there is a safe space in you.

In Their Own Words – Letter to Jaclyn

September 15, 2011 7 comments

This short film is by Brad Dotson, a student at the University of the Arts in Philadelphia who also has Asperger’s Syndrome. Brad made a very personal film about his twin sister, Jaclyn, who has autism.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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