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Posts Tagged ‘diagnosis’

In Their Own Words – Finding Autism Island

March 1, 2012 18 comments
Christine Passey is a wife, mother of two, social worker, and writer. She has been very involved in the autism community since her daughter was diagnosed in 2010. She is currently deeply involved in working to end autism insurance discrimination in Utah. She started her blogwww.thinkingovercoffee.com to work through her thoughts on mothering, autism and advocacy.

Photograph by Heather Sander Photography.

Imagine drifting in a boat, lost at sea.  You have absolutely no idea where you are and the sea is not kind.  There are constant storms and waves.  All the time there is fear.  Where am I?  How did I get here?  How can I find land?  Frequently you think of crazy desperate ideas that might “save you.”  But each time you are disappointed as you find you are paddling in circles.  You are powerless.  All you can do is sit in your boat feeling hopeless, frustrated, alone, confused, and like a failure.
This is how I felt before Skylynn was diagnosed with autism.  I had no idea what was going on, how to help her, and why she was the way she was.  I made desperate attempts time and time again to help her be “normal”.  Maybe this play idea or that strategy might help Skylynn catch up to her peers.  They never worked and I never knew why.  I figured I must be a failure of a mom.  Some days I would give up all together and sit Skylynn in front of Sesame Street and not try at all.  I was so lost, confused and depressed.
Now let us go back to our boat.  One day you see land in the distance.  You think you might be imagining things since you’ve been lost at sea for so long.  But you might as well try and get there, might as well see if it is land.  What do you have to loose right?  Then surprisingly it is land.  It is not the land you imagined.  In fact it looks almost nothing like what you expected.  But, in its own different way it is absolutely beautiful.  It is a difficult land.  Much more difficult then you ever thought it would be.  But it is still land.  You can set up camp and work at making a life for yourself.  A different life then you planned.  One that requires a lot more work then you ever thought possible.  But, it is a good land and you can create a good life on it.
This is how I felt when Skylynn was diagnosed with autism.  I had finally found land.  I had a place to stand, a place to start a life.  I finally understood what was going on.  I was relieved to find out that I was not the horrible broken mom I thought I was.  There were reasons all my desperate attempts to help my daughter become “normal” always failed.  They failed because my daughter wasn’t meant to be normal.  She was meant to be Skylynn; sweet, silly, beautiful, mischievous, unique, Skylynn.
It has been a long time since I was lost at sea.  I have had time to explore the devastating pit falls in this land, and I have felt the loneliness, despair, pain, and rejection that lie in them.  But I have also climbed to the amazing mountaintops of this land.  These highs are indescribably.  The joy, love, excitement, triumph, pride and bliss of these peaks can never truly be explained to someone who has not climbed them.  It is true that my land is very different from most of my friends’ lands.  But I would not change it for the world.  My land has taught me to love every small beautiful moment and to be patient through every difficult one.  It has taught me what true love is and who true friends are.  It has taught me I am stronger than I ever thought possible.  But most of all it has taught me that Skylynn was never lost.  Only I was.  It is a beautiful thing to live on the island of autism with her.  I love you my beautiful daughter.  Thank you for this place and giving me the chance to live on it with you.

*Interesting note.  I wrote over half of this within a few months of Skylynn’s diagnosis.  I couldn’t finish it because I was just beginning to explore “Autism Island”.  It has been really interested to go back and finish it now.  It is my true perspective at two very different times during this process.
“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.

When an Autism Diagnosis Brings Relief

February 29, 2012 13 comments

Vincent Randazzo’s son Michael was diagnosed with Down syndrome early in life, leading Vincent to become actively involved with the National Down Syndrome Society (NDSS). Autism Speaks and NDSS are now partnering in their support before Congress for the Achieving a Better Life Experience (ABLE) Act which would allow families raising children with disabilities, such as autism or Down syndrome, to save tax-free for their future needs.

Vincent Randazzo explains how his family’s connection with autism runs even deeper.

When my son Michael was born with Down syndrome 13 years ago, my wife Dorothy and I were upset and sad for Michael that he would not experience a normal life. Because of our circumstances, however, we did not experience the sense of terror that so many parents face when they get the news that their newborn has a developmental disability.

Michael has a brother and a sister who would love him and care for him like any other sibling.  At the time, my wife was a public health nurse in the public school system and an advocate for students with special needs.  We quickly became aware that medical research had advanced to the point where people with Down syndrome were living much longer and more fulfilling lives, and the future held exponentially greater promise.

I immediately engaged in Down syndrome advocacy, supporting the priorities of the National Down Syndrome Society and serving on the boards of a local parent support group and a national research foundation.  But within a few years, everything we thought we knew about Michael’s condition, and how to give him the best chance at living an independent life, was turned upside down.

Around age four, we started to notice that Michael’s developmental progress had stopped and, in many ways, he was regressing.  He became less talkative, developed verbal tics, and made eye contact less often.  He would obsess about movie videos, ceiling fans, and where we placed his food on the plate.  We would attend social gatherings hosted by the local Down syndrome support organization, and notice that he was socially different than most of the other children.  He didn’t play or interact with his peers the way a typical child with Down syndrome did.

During family vacations or visits with friends and relatives, Michael would be irritable and disruptive.  He would be violent toward other children, grabbing their necks, hitting them in the face or pushing them to the ground.  We were always being told that people with Down syndrome were so lovable and good-natured.  Why wasn’t that the case with our son?

Around age 5, we started raising concerns about Michael’s developmental issues with his pediatrician and pediatric neurologist, and told that people with Down syndrome have varying degrees of the disability.  During one medical visit, we were told “so what if he had autism, what difference would it make?”  One neurologist actually treated him for Attention Deficit Hyperactivity Disorder.

At about age 8, we brought up our suspicions about autism withMichael’s teachers and, to our surprise, they acknowledged the possibility.  We were referred to TEACCH, a group at the University of North Carolina Medical School in Chapel Hill which works with individuals with autism spectrum disorders and their families by providing clinical services, training teachers and care providers, and conducting psychological, educational, and biomedical research.

The initial screening determined that Michael met the criteria to be tested, and we were put on an 18-month wait list to be evaluated for autism. He was finally tested around age 10. The conclusion was that Michael had moderate autism, and that autism – not Down syndrome – was his primary disability.

We were advised to change the way we think about Michael’s disability and how to plan for him medically, socially and educationally.  After having been encouraged to put Michael in inclusive educational, social and family situations where he was continuously failing, we now know that a self-contained environment was best.  The medicines he took and the way his medical providers approached his care significantly changed.  With the dual diagnosis, he became eligible for supportive services from the State, and his school IEP was revised to emphasize more life skills and social goals.

The dual diagnosis and subsequent changes in the way we approach Michael’s disability have not alleviated his life challenges.  In fact, as he has grown older, those challenges have only increased.  But the diagnosis has provided relief to our family because we now understand him better.  We know that transitions are hard and social situations are so difficult for him, so we know how to plan for them.  And I am no longer constantly frustrated and angry with his inability to do simple tasks.

Having more realistic expectations about his progress and goals in life has actually led me to dream about someday starting a business together when Michael finishes school and I retire.

In Their Own Words – Our Path to Diagnosis

February 16, 2012 32 comments

This post is by Jennifer, a stay at home mom with two children.  In 2009 her family started walking for Autism Speaks and since then, we have raised over $38k and are gearing up for another year.  Our walk team is called Grape Jelly on Pizza because my son has a very strange appetite! You can check our her blog Grape Jelly on Pizza which was created  to help others navigate through all the difficult questions and behaviors associated with autism and to also remind parents that they are not alone.  Support – Compassion – Awareness.

It was not a simple path to his diagnosis.  Realizing there was a problem was tough.  Knowing where to start was hard and dealing with the fact that your child will have autism his entire life was horrible. I haven’t heard one story that was cut and dry yet about getting a diagnosis.  Here is our story.
My son was born at 13:13 on January 7th.  (13 happens to be a lucky number for me.)  It seemed like everyone was there to welcome in the first born grandson from both sides.  It was a happy occasion.  We had many visitors for months to come.  He was a squirmy little guy with a big smile.  He didn’t like to stay still, ever. He was hitting all of his milestones and his gross motor skills were off the charts.  He was climbing stairs before he could walk.  Everything seemed normal.

We didn’t want to wait, so we had another baby.  My daughter and son are 17 months apart.  Oh, how our lives changed when there were two.  Lack of sleep because my son still wasn’t a good sleeper and now a newborn.  They would both be up every three hours and not at the same time.  There were days that were just a blur.

A friend of mine had a son who was five months younger than B.  She would bring T over to play often.  That’s when I started to notice differences between the boys.  T would talk to her, point at things, make eye contact, play appropriately with toys; the list went on and on.  Now, I’m not big on comparing but it couldn’t be helped.  Why was B so much different than T?  At night I would tell my husband about all the differences and would end up crying at the dinner table.  After a while he didn’t want my friend to come over anymore because of how upset I would get.

Confirmation bias is a tendency for people to favor information that confirms their preconceptions or hypotheses regardless of whether the information is true. 

When we were alone he was fine.  We were fine.  It didn’t matter that he couldn’t talk.  Kids throw fits.  We could justify anything.  We were good at explaining what was happening or not happening away.  Confirmation bias.

Finally we heard the word autism.  Two family members stepped forward at two different times to express their concerns.  Unfortunately, they left it up to me to relay the information to my husband.  It is sorta like when people keep asking the girl, “When are you going to get engaged?”……go to the guy to find out.  It puts her in a bad spot.
At my son’s wellness visit at 2+ we asked if he could have autism. While I was holding my son on my lap, the pediatrician said his name.  My son looked up at the doctor and the doctor told us, “No.  He doesn’t have autism.  If he did, he wouldn’t have looked at me.”  OK.  Again, confirmation bias.  A doctor confirmed it, he didn’t have it.  Sounded good.  Everyone else is crazy.  Instead he wrote a prescription out for a speech therapist.  This we would do.

After the intake and he started therapy, his speech therapist suggested he had developmental delay.  OK.  No ‘autism’ word.  We kept with the speech therapy.  In the meantime I had contacted the county to get started on getting him evaluated for speech delay and developmental delay.  Not autism.  The papers were received in the mail, completed and re mailed that same day.  I knew he needed help.  I waited and finally got the appointment call.

So we went and of course he qualified for services.  The report brought me to tears.  I HATE reading those reports.  Still do.  Then I get a call from someone saying she was his teacher.  I was like, what?  Turns out he qualified for 1/2 days, 4x a week and he could ride the bus.  He started when he was just 3.  I had never been away from him with the exception of having my daughter.  It was tough.  Then a few months went by and I received a flier in his backpack advertising an Autism Awareness day at Sesame Place.  Autism?  He doesn’t have autism.  Speech and developmental delay yes but not autism.  I called the teacher to see if it was a mistake and she said, oh, I must have put it in his backpack by accident.  See, every professional we had dealt with up to this point had never used the autism word.  Since then we found out why.  If a professional says ‘autism’ to you and you don’t have insurance, then they are responsible to pay for your services.  Didn’t know that did you?

I also started going to a parent support group through the IU and after the second time a mom told me the truth……speech delay & developmental delay = autism.  We now had to find a developmental pediatrician to get an official diagnosis then start with medical assistance.  My head was spinning and I went into depression.  I swear I lost days, weeks and months.  Feeling completely numb and truly alone in my quest to get help.  I tried my best not to show the stress.  Like I was in control but I was falling apart.

Eventually, we went in to see the developmental pediatrician.  We walked out with an official diagnosis of autism.  For the first time I had a smile on my face.  I knew what it was, it had a name and I was going to do everything in my power to help my son.  Nothing was going to stop me and nothing has.  We are a strong family unit out to do whatever it takes to not only help our son but to help others.  We are not alone.  You are not alone.  We are all here for each other.  We need to continue to reach out to others.

“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.

If breakthroughs take time, how can research help families today?

February 9, 2012 10 comments

Posted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D.

Dear friends,

Recently, someone posed a question that made me think hard about the immediate relevance of our research to those affected by autism. I had been explaining Autism Speaks’ new focus on developing medicines that, one day, will target autism’s core symptoms in ways that reduce disabilities and improve learning abilities. Someone commented that this would likely take years to accomplish. I had to agree. His follow-up question: So, how does research help families today?

For the answer, I found myself thinking about how the Cystic Fibrosis Foundation faced this same question decades ago. Like Autism Speaks, the Cystic Fibrosis Foundation was grappling with a disorder in its medical infancy. Cystic fibrosis was defined as a medical condition in 1938. The Foundation followed in 1955. At that time, the median age of survival for those affected by the disorder was just ten years.

The leadership of the Cystic Fibrosis Foundation knew they were grappling with a complex disorder that would take years to fully understand. So they developed parallel research efforts. One focused on the immediate development of improved diagnosis and treatments that could ease symptoms. The other focused on basic science with the goal of ultimately revolutionizing treatment with therapies that target the disorder’s root causes.

Their short-term efforts included support for a network of clinical care and research centers, a patient registry and studies that focused on improving treatment of chronic symptoms and associated medical conditions. Within a relatively short time, diagnostic methods improved and physicians began adopting new gold-standard practices, including new methods for fighting lung infections and improving lung function – all made possible through research that the Cystic Fibrosis Foundation helped support. The median age of survival jumped from 10 years to 37 years!

Meanwhile, long-term research efforts focused on understanding the causes and biology of cystic fibrosis. In 1989, scientists made major breakthroughs in genetic understanding. This, in turn, led to tremendous insights into the disorder’s underlying biology. Then, just last week, the FDA approved the first drug to treat the underlying cause of cystic fibrosis, rather than its symptoms. One doctor described how his patient was able to “shovel snow for the first time.” Not coincidentally, the Cystic Fibrosis Foundation had contributed millions of dollars to the development of this drug (Kalydeco). Its early funding had been essential to convince drug companies to make the larger financial investment needed to bring any successful drug to market. In the process, the foundation negotiated a deal to earn drug royalties, which will now be reinvested in further research advancements. Just as exciting, other “disease-modifying” cystic fibrosis drugs are moving through the research pipeline.

This is the same strategy that Autism Speaks is taking with investments in both research that improves quality of life in the short term and longer-term research that promises to transform how autism is treated.

Here are just a few examples of funded research projects with the potential to improve quality of life in the near future:

  • Identification of preventable environmental risk factors for autism spectrum disorder (ASD)
  • Validation of questionnaires that pediatricians can use to screen babies for ASD and, so, offer earlier intervention that will improve outcomes
  • Biomarkers (e.g. immune alterations) that could identify infants at risk for ASD
  • Development of effective early interventions for babies before the full syndrome develops
  • Support of technological inventions to enhance communication in nonverbal persons
  • Development of physician guidelines for assessment and treatment of medical conditions associated with ASD
  • Development of more effective treatments for associated conditions, including sleep disturbances, GI disorders, seizures and anxiety
  • Development of interventions to improve employment success and relationship skills in adults
  • Development of cognitive rehabilitation interventions for adults

Even as we support the development of these improved services, we are also investing in research that can identify the most effective ways to broadly implement new gold-standard practices to produce positive changes in community healthcare, education and support services for all persons who struggle with autism. This type of “dissemination research” also tells us how to best target limited resources.

Meanwhile, our long-term investments are advancing the understanding of autism’s underlying biology and the genetic and environmental factors that contribute to its development. These investments are exploring the role of the immune system, brain signaling pathways and the GI system, among other topics. Over the last five years, tremendous progress in these areas has advanced research to the point where we are now collaborating with industry to develop novel drugs with the potential to ease severe and disabling core symptoms – in adults as well as children. Fortunately, the tools we have available today will make drug discovery and development much faster than before.

Connecting the dots
At Autism Speaks, the research we fund interconnects with all parts of our mission, including awareness, advocacy and family services. Our awareness campaign, for example, is shaped by research that has revealed great disparities in access to services by communities such as ethnic-minority and low-income families.

Our advocacy of insurance reform, in turn, critically depends on research that demonstrates how early intervention improves outcomes. Research also plays a critical role in bolstering our advocacy for adolescents and adults. For example, a recent study demonstrated that adults with ASD face greater challenges in employment and social participation than do adults with other common disabilities. More importantly, this same study suggests that providing transition services immediately after high school is the most cost effective way to improve outcomes. We can use this information to advocate for improved services during the transition from high school to adulthood. Other currently funded studies promise to help us advance insurance reform to assure coverage of other interventions with proven benefits for school-age children and adults.

Similarly, Autism Speaks is funding research aimed at determining the real-world effects of proposed changes in the diagnostic criteria for autism. Will these new criteria exclude people previously diagnosed with ASD? Will they affect access to vital services? These answers will be crucial to our ability to advocate for any necessary changes in the proposed criteria.

While we see our research improving lives now, we remain committed to our long-term goals of revolutionizing treatment of ASD. I know in my heart that someday we will be making the kind of breathtaking announcement that we heard from the Cystic Fibrosis Foundation last week. The day is coming. In the meantime, we will ensure that our scientific mission remains relevant to our families today.

Warmest wishes,

Geri Dawson
Chief Science Officer, Autism Speaks

I’ve been reading news reports that it might be possible to detect autism by watching how much a 1-year-old focuses on a speaker’s mouth. Is this true?

January 27, 2012 4 comments

This week’s “Got Questions?” answer is from Autism Speaks Chief Science Officer Geri Dawson, Ph.D.

In recent days, you may have read media stories about research showing that typically developing babies tend to switch from eye gazing to lip reading when first learning to talk, but then switch back to focusing primarily on a speaker’s eyes by 12 months. The research report appears online this week in the Proceedings of the National Academy of Sciences.

In reporting their results, developmental psychologist David Lewkowicz and doctoral student Amy Hansen-Tift, of Florida Atlantic University, suggest that this shift in focus may be different for infants who have autism spectrum disorder (ASD) or are at risk for developing it. Taking this idea a step further, they propose that paying attention to how babies shift their focus during their first year of life might help identify infants at risk for ASD – perhaps before other obvious symptoms emerge. To back their idea, they cite previous research suggesting that 2-year-olds with autism tend to look mostly at the mouths of those speaking to them, while typically developing 2-year-olds focus mostly on eyes.

It’s an intuitively appealing idea. But in truth, past studies have not consistently supported this notion that children with ASD focus less on eyes and more on mouths.

It is true that children with autism tend to pay less attention to social actions such as expressions. However, it’s possible that children with autism, like typical children, show a similar pattern of paying more attention to the mouth when they are learning language.

Given that language delays are common among children with autism, one would predict that this language-acquisition period might be prolonged. In addition one would expect that mouth-versus-eyes gaze patterns would vary among children with ASD depending on each child’s level of language skill.

Fortunately, while we don’t yet know whether eye gaze is a reliable predictor of ASD, research solidly supports the usefulness of other signs for screening toddlers. The American Academy of Pediatrics (AAP) recommends that all children receive autism screening at 18 and 24 months of age. One of the AAP’s recommended screening tools is the Modified Checklist for Toddlers, or M-CHAT, which you can access on our website, here. Please also see our Learn the Signs resource page.

Meanwhile, Autism Speaks continues to fund a wealth of research on early screening and diagnosis because evidence suggests that early intervention improves outcomes. You can explore these and other Autism Speaks studies here. This research – like all the resources Autism Speaks develops and offers – is made possible by our families and supporters. Thank you for your support.

For more research news and perspective, please visit our science page.

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

The Changing Definition of Autism: Critical Issues Ahead

January 20, 2012 76 comments

Posted by Autism Speaks Chief Science Officer Geri Dawson, PhD.

Many in our community are understandably concerned that a planned revision of the medical definition of autism spectrum disorder (ASD) by the American Psychiatric Association (APA) will restrict its diagnosis in ways that will prevent many persons from receiving vital medical and social services.

Before I catch you up on some of the details behind this revision, let me first say that although the proposed changes have a solid scientific rationale, we at Autism Speaks are likewise concerned about their effect on access to services. It is crucial that these changes don’t result in discrimination against people who are struggling with autism symptoms.  As the APA moves forward in formalizing the new definition, we urge that this issue be kept at the forefront of the discussion. As the changes are implemented, scientists, families and providers will all need to carefully monitor its impact on those affected by all forms of ASD. The bottom line is this: We must ensure that all those who struggle with autism symptoms get the services they need.

Now let me provide some background.

The APA is currently completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which will be published in 2013. The DSM is the standard reference that healthcare providers use to diagnose mental and behavioral conditions. As such, it influences availability of treatments as well as insurance coverage.

An expert panel appointed by the APA has proposed that the new version of the DSM change the current definition of ASD, in part because of shortcomings in how it is currently used for diagnosis. The new definition would do three things. First, it would eliminate the previously separate categories of Asperger syndrome and pervasive developmental disorder, not otherwise specified (PDD-NOS) from the diagnostic manual. Second, it would fold these disorders, together with “classic” autism, into the single category of ASD. Finally, it would change the criteria for diagnosing ASD.

Under the current definition, a person can qualify for an ASD diagnosis by exhibiting at least 6 of 12 behaviors that include deficits in social interaction, communication or repetitive behaviors. Under the proposed definition, the person would have to exhibit three deficits in social interaction and communication and at least two repetitive behaviors. The APA has also proposed that a new category be added to the DSM – Social Communication Disorder. This would allow for a diagnosis of disability in social communication without the presence of repetitive behavior.

Based on a recent study, some experts are suggesting that many individuals who currently meet the criteria for ASD, especially those who are more cognitively capable, would no longer meet criteria for ASD. If so, the new criteria would result in discrimination against people who are more cognitively capable.  We are concerned about this and will do all we can to ensure that all people who are struggling with autism symptoms retain the services they deserve.

As these new criteria are rolled out over the coming year, Autism Speaks’ position is that it will be vitally important to collect meaningful information on how the change impacts access to services by those affected by autism symptoms. Further policy changes may be needed to ensure that all persons who struggle with autism symptoms get the services they need.

It is important to keep in mind that this revision in the medical definition of ASD is not just an academic exercise. These changes in diagnostic criteria will likely have important influences on the lives of those in our community who critically need services.

[Editor's note: Please see the Autism Speaks policy statement on the DSM-5 revisions and a related FAQ here.]

Tune-in today to hear Autism Speaks’ leadership discuss the recently released analysis of the DSM-5, to be published in 2013, and hear about its potential implications for individuals to receive an autism diagnosis and appropriate services.

  • Then, please join us for a live web chat at 3 pm Eastern with Autism Speaks Chief Science Officer Dr. Geraldine Dawson and Vice President of Family Services Lisa Goring – click on the tab on the Autism Speaks Facebook page to join in!
You can read the full Chat Transcript here.

Watch Autism Speaks’ Dr. Andy Shih discuss the story on MSNBC “News Nation with Tamron Hall”

Autism Boom: An Epidemic of Disease or Discovery?

December 16, 2011 24 comments

Today’s “Got Questions?” answer is from Autism Speaks Chief Science Officer Geri Dawson, Ph.D.

Earlier this week, the LA Times ran a provocative article under the questioning headline above. It suggested that autism’s twentyfold increase over the last generation may be “more of a surge in diagnosis than in disease.” In fact, scientific evidence suggests that autism’s dramatic increase is only partially explained by improved screening and diagnosis.

Some of the clearest evidence of this increase comes from research documenting a 600 percent jump in autism caseload in California between 1992 and 2006. In related studies (here and here), Peter Bearman estimated that around 42 percent of the increase can be explained by changes in diagnostic methods and awareness with another 11 percent possibly due to increases in parental age at the time of conception (a known risk factor).

Taking into account all the factors that have been studied, this leaves approximately half of the increase due to still-unidentified factors. Through research, we’re increasing our understanding of these influences. For example, we now know that prematurity and extreme low-birth weight increase autism risk in babies. Certainly survival rates for premature and very low birth weight infants have increased considerably over the last twenty years.

While no single factor is likely to explain the marked increase in autism’s prevalence, researchers agree that a number of influences likely work together to determine the risk that a child will develop an autism spectrum disorder (ASD).

Bottom line: It is undeniable that more children are being diagnosed with ASD than ever before. The need for increased funding for autism science and services has never been greater. Autism costs society is a staggering $35 billion per year. And with more cases, that figure is likely to increase. Fortunately, there is clear evidence that earlier identification and intervention and supports throughout the lifespan can improve outcomes and quality of life.

If you are concerned about your child’s development, please see the “Learn the Signs” page of our website. If you are an adult struggling with issues that might be related to autism, please follow the hyperlinks to our resource page for adults and our page on Asperger Syndrome.

Got more questions? Send them to GotQuestions@autismspeaks.org. And join our next live webchat with Dr. Dawson and her co-host, Autism Speaks assistant vice president and head of medical research Joe Horrigan, MD on January 5th. More information on their monthly webchats here.

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.

LIVE Q & A Transcript with Co-Founder Suzanne Wright

September 22, 2011 3 comments

Suzanne and Bob Wright are co-founders of Autism Speaks, the world’s largest autism science and advocacy organization. Inspired by the challenges facing their grandson, who suffers from autism, they launched the foundation in February 2005.

Suzanne has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children’s Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine’s National Women’s Division and The Women of Vision Award from the Weizmann Institute of Science.

In 2008, Suzanne and Bob were named in Time 100’s Heroes and Pioneers category, for their commitment to global autism advocacy. They have also received the first ever Double Helix Award for Corporate Leadership from Cold Spring Harbor Laboratory, the NYU Child Advocacy Award, the Castle Connolly National Health Leadership Award and the American Ireland Fund Humanitarian Award. In the past couple of years the Wrights have received honorary doctorate degrees from St. John’s University, St. Joseph’s University and UMass Medical School – they delivered respective commencement addresses at the first two of these schools. The Wrights are the first married couple to be bestowed such an honor in St. John’s history.

The Wrights have three children and five grandchildren.

Click here to read A Grandparent’s Guide to Autism.

12:59
Hi – I’m Suzanne Wright – Co-founder of Autism Speaks and I’m so happy to be joining this web chat today!
1:00
Comment From James McDonald

Good Afternoon

1:00
Comment From sha

thankyou for your time

1:00
Comment From Lucas mom

hi

1:01
I’m here today as Christian’s grandmother – and I’d like to talk about my role as a grandparent and advocate.
1:01
Comment From donna

Good Afternoon all

1:02
We are so excited about our new toolkit which is a grandparent’s guide to autism which can be downloaded for free on our autismspeaks.org website.
1:03
Comment From Emily

Hi Suzanne, I have a brother with Autism and just want to say thank you for your time you put into Autism Speaks.

1:04
Hi Emily.  Thanks for your kind words – I do this for Christian and for all families and individuals affected by autism.  Thanks for joining our discussion today.
1:06
Comment From Lalania Lind

I have a question. Did your family find it hard to get help from the education system for Christian?

1:09
Hi Lalania – very much so. Here is a guide that we provide from autism speaks – a School Community Tool Kit which can give you some advice – and an our IEP – Individual Education Program toolguide – which provides process and practical tips to knowing your child’s rights.
1:09
Comment From Carol

Hello Suzanne! Thank you for coming on to talk with us grandparents today. I was wondering what activities you like to do with Christian.

1:11
Hi Carol! We love to swim with Christian… he loves to go to the playground, he loves to go to the beach and swim in the waves, and he just made a beautiful little necklace for me so we’re starting on some arts and crafts these days.
1:11
Comment From Melissa

My son’s grandmother is a great advocate for our son. He’s now 8 and enrolled in a private Christian school here in Atlanta after spending 3 years in an intensive program at Emory University. I could talk to you all day about all the things she’s done for him and for us. Thank you to Autism Speaks for first jumpstarting our family into seeking treatment for our son back in 2005.

1:13
Melissa, hi. You have a wonderful mom. Speaking as a mom I knew from the get go just how important it was to be there not only for my grandson, but for his parents as well. We are glad that Autism Speaks was able to help your family at a very sensitive and critical time.
1:13
Comment From Sally

How do I share my time with my other grandchildren?

1:15
Hi Sally. This is VERY important. Not only for the sibling of the child affected but for the little cousins too. We as a family take turns with Christian when we are all together so I can spend some time with his brother and cousins. I must say that they are beginning to understand what autism is, and I do spend time trying to explain why special needs.
1:15
Comment From Annie

This Halloween we will trick or treat for Autism Speaks and ask for donations in lieu of candy! My 3 yr old son, Jamey doesn’t like candy, but he is autistic and that’s how I came up with this idea.

1:16
Hi Annie – We LOVE your idea and we’ll be posting it on our website!! I love the fact that you found a way to celebrate Halloween in your own special way.
1:16
Comment From patricia chabra

I am PAtricia Chabra,I have two son with ASD disorder,I have been doing autism walk for years,advocating for children and adults affected,you are such a mentor and inspirational person suzanne,god bless you

1:17
Hi Patricia – even though it’s not possible for me to be at every walk I am always there in spirit. I’m glad to be connecting with you now here – thank you for all your kind words and God Bless you too.
1:19
Comment From Donna McCombs

First, Thank you for giving your time to us for this chat. How can I teach my daughter’s grandparents to be more understanding about her disorder?

1:21
Hi Donna – our new Grandparent Tool Kit addresses this very issue. It will absolutely give you pointers on how to interact with the other set of grandparents who may be as supportive as your own parents. I really hope this helps – I know how difficult it is.
1:21
Comment From Stephanie

I have a grandson named Jaylin and we have been trying to find him weighted blanket he gets to hot if we put the ones he want but wont sleep without them so we was told about the blanket just cant find them.

1:22
Hi Stephanie – we have a list of sensory products on our website.
1:22
Comment From mark

hi Suzanne!:) im mark from the philippines. i’m glad about organizations such as Autism Speaks and really appreciate the facebook account. I have a brother with autism; just wondering, Whats the latest research in autism, such as its cause or new teaching methods given to autistic children?

1:24
Hi Mark! I’ll give you a link to our science which contains the most up to date and cutting edge science news. On another note we have our Light It Up Blue campaign which runs worldwide during the month of April. Can you help me light up some buildings in the Philippines blue?? We want to light up the world!
1:24
Mark – I hope your brother is doing ok.
1:25
Comment From Melanie Hobbs

Hi Suzanne and other parents/grandparents! LOVE Autism Speaks and the Light it up Blue campaign. One thing I’d love to see is resources and ideas for grandparents for toys/gifts. My son is 9 and there are tons of “autism toy” ideas for younger kids, but I would love to find more ideas for older kids. When it comes to birthday time, Grant’s grandparents are always at a loss (and sometimes I am too!). :)

1:26
Hi Melanie! First, thanks for helping us to Light It Up Blue! We actually have a Toys R Us online guide which was specifically created for differently-abled kids.
1:27
Comment From Melissa

It was actually the Autism Speaks series on NBC back in February 2005 that made us realize what we had been dealing with for 18 months despite protests from our pediatrician to the contrary. Our son was then diagnosed with classic autism that April. He’s now mainstreamed with no educational supports, is on the A honor roll, and has become a bit of a musical prodigy much to our delight. We just recently told him about his autism and he’s still wrapping his head around it. We are finding his classmates are beginning to notice his social and behavioral differences and wondered if AS had any suggestions on how to explain what autism is to young non-sibling children.

1:30
Hi Melissa – great question. There’s portion of our School Community Tool Kit devoted to peers. I’m so happy that you were able to see our Autism Speaks series on NBC. In Feb. 2005 no one was talking about autism – now we have our country but the world talking about it. If you are not familiar with our Light it Up Blue campaign I’d love to have your help to shine a light on autism.
1:31
Comment From Sally

At this point in my life it is too hard for me to talk “live” with other grandparents. Are there any Grandparent support chat rooms?

1:33
Hi Sally. We would love for you to check out the grandparent autism network – which provides support and resources for grandparents.
1:33
Comment From Guest

Hi I’m Flo from Germany. I am an SLP who has worked with autism fro many years. It is so encouraging to be able to use the web to support families affected by ASD.

1:35
Hi Flo. Yes it is very encouraging – what would we do with the internet. Please be sure to connect with us on all of our social networks. And also – help us light Germany up blue!
1:37
I need grandparents!! I feel we should have the support of the AARP with the numbers being what they are; 1 in 70 boys and 1 in 110 children. Thousands of grandparents without question are affected by autism. Here is a link to the President of the AARP: the Board.
http://pubs.aarp.org/aarpannualreport/servicesincar2010?folio=18#pg18Please ask them to help Autism Speaks and our grandparent community to raise awareness about the issues that affect our children and grandchildren with autism by making our grandparent tool kit(http://www.autismspeaks.org/sites/default/files/a_grandparents_guide_to_autism.pdf) available on their website and feature an article on autism in their AARP Magazine during the month of April, Autism Awareness Month.
1:40
It’s so important that the AARP join Autism Speaks – because autism affects everyone – the child, the parents, the siblings, the friends, the teachers, and the Grandparents – who often become the child’s emotional rock.
1:43
Comment From Lania

But how do you get a grandparent to come out of denial? We have been trying for years to help our daughters grandparent that she has autism, but she just will not believe us or the doctors.

1:44
Hi Lania – you know, everyone deals with the diagnosis differently, and I certainly feel for your situation. We have a 100 Day Kit which helps families through the newly diagnosed period. As part of the 100 Day Kit – we have a “Learn the Signs” section describes the hallmark signs of autism in detail. So maybe presenting this information to your daughter’s grandparent will help them understand the diagnosis of autism better.
1:46
Comment From Donna McCombs

Our grandparents on both sides say that if she had more discipline she would not have any behavior issues.

1:46
Donna – the misconception is that aspects of autism is about lack of discipline. This is not the case. Please go to our Learn the Signs and our Grandparent tool kit – I really hope this helps.
1:48
You can learn the signs here! http://www.autismspeaks.org/what-autism/learn-signs
1:52
It has been such a wonderful experience chatting with so many of you today. I really hope that our Autism Speaks website offers you the resources that you need as you navigate through the complexity of living with autism. Know that we are here for you and appreciate all your support. The more people who know about autism will be more willing to help ALL families everywhere. And we can raise the global consciousness by lighting up the world blue in April. Thank for the opportunity to chat with all of you today. Happy Autumn Day. Suzanne Wright
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