The Autistic Place

At long last, I am thrilled to report that Autism Speaks, the nation's largest autism-related non-profit, has appointed an adult with an autism spectrum diagnosis to its Scientific Advisory and Scientific Treatment Boards.  That adult is the well-known author and speaker John Elder Robison, whose autobiography "Look Me in the Eye" has helped raise awareness of and understanding of autism around the world.

Robison is not, himself, a scientist; however, according to the press release, "Robison serves as an adjunct professor in the department of Communication Sciences and Disorders at Elms College in Chicopee, Mass. He has also served on the public review board for the National Institutes of Mental Health, and is currently involved in TMS autism research at Harvard Medical School and Beth Israel Deaconess Medical Center."

Also in the press release was an impressive statement from Geraldine Dawson, Ph.D., chief science officer at Autism Speaks:

It is essential that our grant funding reflects the needs and perspectives of the community we serve, namely, people with autism spectrum disorders.  We are very pleased to welcome John to our scientific review boards. His insight and skills will prove invaluable.

In my opinion, this move is long overdue - and I hope it's just the beginning of a movement on the part of Autism Speaks to allow those with autism to... speak.  While any appointment to Autism Speaks' board will probably meet with criticism from one or another element of the autism community, I personally am delighted to read of John's new position.

Congratulations to John Elder Robison for his new position, and to Autism Speaks for appointing him.

Autism Speaks Appoints Autistic Self-Advocate to Board originally appeared on About.com Autism on Tuesday, March 9th, 2010 at 13:35:47.

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A new study suggests a trend toward developing hyperactivity among typically developing elementary-school-aged siblings of autistic preschoolers and supports the notion that mothers of young, autistic children experience more depression and stress than mothers with typically developing children...

Thousands will unite for autism at the 8th annual Los Angeles Walk Now for Autism Speaks at the Pasadena Rose Bowl, Saturday, April 24, 2010. Powered by volunteers and families with loved ones on the autism spectrum, this fundraising effort generates vital funds for autism research, awareness and family services...

A new study conducted by researchers at the University of Oregon took a look at older siblings of children on the autism spectrum, and found a slightly greater likelihood of developmental issues.  The difference, however, was not statistically significant, which seems to beg the question "what precisely does this study show us?"

The researchers seemed equally puzzled by the usefulness of their findings, stating in today's Newswise: "We know there are risk factors, but we don't know if they result from having a child with autism, or if there are genetic predispositions as part of the broader autism picture," McIntyre said. "Are these difficulties the result of child-rearing challenges, or are they negatively impacted because of shared genetic risks?"

What do we really know so far about this issue?

We do know that autistic traits seem to run in families.  We do know that parenting a child with autism can be difficult and stressful, and that the hard work and stress can take a toll on parents' time, energy, patience, relationships and bank accounts.  We do know that being the sibling of a child with autism can be tough, as children with autism may take the lion's share of parents' time and energy - and living with an autistic sibling can be stressful, embarrassing, and even - at times - physically challenging.

It seems to be a no-brainer that parents and siblings of children with autism (particular autism in its more severe forms) are under unusual stress.  In some cases, parents and siblings are able to rise to the challenge and actually grow stronger with the stress. In more cases, though, parents and siblings suffer from the strain, presenting with issues ranging from poor health and exhaustion to depression to hyperactivity.

In fact, say the researcher on this particular project:

Mothers of autistic children...need assistance for day-to-day child-rearing activities to give them some time to be individuals. As part of her research and clinical work at UO's nationally recognized Child and Family Center, she is looking at interventions that support parents and help kids with their daily living skills and behavior management.

• When Does the Sibling Without Autism Need Help?
• Knowing Joseph: A Children's Novel from the Sibling's Point of View
• Helping Mothers of Children with Autism Cope with Depression
• Getting Past Blame and Worry to Help Your Child with Autism

Are Siblings of Autistic Children at Higher Risk of Developmental Issues? originally appeared on About.com Autism on Tuesday, March 9th, 2010 at 10:23:50.

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I'm in the process of building a new section on autism and higher education, including resources on preparing a teen with autism for the college experience; selecting a college; autism-friendly colleges; and more.  Of course, this section will be of greatest interest to anyone with teens on the spectrum who are at a place where college might be an option.

If you have additional resources to share, please add to the list through the linked "User Answer" forms, here on the blog, or by email.  Specifically, I'm looking for information about:

• Determining if your teen is "college material"
• Making the most of public school programs for "transition"
• Online or distance college prep programs
• Residential or day college prep programs to prepare teens for college/independent living
• Autism friendly colleges, universities and junior colleges
• Tips for managing campus life (room mates, professors who just don't "get it," taking advantage of disability services on campus, etc.)
• Scholarships specifically intended for students on the autism spectrum

Here are the articles I've created so far; I look forward to your help in making this section more robust!

What Is Transition Planning for the Teen with Autism?

What is transition planning for the teen with autism? It's the process that allows your child with autism to move smoothly from school to the "real world." And it's mandated by law.

Going Through College with Autism: Hints and Tips

What does it take for a teen with autism to succeed in college? Maureen Johnson, Ph.D., an adult with an autism spectrum diagnosis, offers hints and tips from her own experience.

Help Your Teen with Autism Prepare for College

Your child with autism may be intellectually ready for college, but chances are he'll need help and support on campus. Here are some important steps to take as you prepare for, select, and get started at college.

Programs to Prepare Teens with Autism for College

Even after years of school, social skills coaching and therapy, few young people with autism are ready to set out for full time residential college with no extra preparation or support. Fortunately, a few farsighted organizations have identified this problem, and stepped up to address it. Up next: Autism-Friendly Colleges and Universities and Scholarships for Students on the Autism Spectrum.  Stay tuned!

Announcing New Resources on Autism and Higher Education originally appeared on About.com Autism on Tuesday, March 9th, 2010 at 07:15:42.

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Angelman Syndrome is a rare but serious genetic disorder that causes a constellation of developmental problems in affected children, including mental retardation, lack of speech, and in some cases, autism...

The UK has issued a document entitled the Adult Autism Strategy, a wholistic approach to identifying, diagnosing and serving the needs of adults on the autism spectrum throughout the country.  This is really the first time that anyone has presented a national strategy for serving adults with autism - and the approach is ambitious.  It builds on the earlier Autism Act, which included positive language but few concrete recommendations.  According to the introduction:

This national autism strategy - the first ever created in England - is the next major landmark in this process. It represents a shared approach towards a common goal: a society that not only accepts and understands autism, but also provides real opportunities for adults with autism to live fulfilling and rewarding lives.

The strategy is built on a fundamental recognition: too many people with autism are missing out on the chance of the quality of life that others enjoy. This is a denial of their potential, their personal aspirations, their hopes for the future. It places a heavy burden on their families, and, as many have pointed out, a heavy burden on the UK economy too.

Included in the document are recommended steps for ensuring access to diagnosis and medical care, training for and access to employment, opportunities and support for independent living, and support for local services and programs.

Like so much else in today's world, the Strategy, while outstanding in concept, comes with almost no money attached.  What that means, of course, is that action may be a long time coming.  The National Autism Society of the UK has written a fairly extensive description of "what the Strategy means to you;" among other things it explains that the Strategy covers only England (and not the other nations of the UK).  In addition, they note, "It might take a long time before you see a difference in the help that your local council or health service offers you."

UK's New Strategy for Adults with Autism originally appeared on About.com Autism on Saturday, March 6th, 2010 at 07:42:22.

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A recent study looking at six-month-old infants may shed new light on our understanding of how autism spectrum disorders develop.  The study looked at "at risk" infants, selected on the basis of having a sibling on the autism spectrum.  According to an article in MedPageToday:

At six months, children with autism spectrum disorder demonstrated behavior similar to other children, gazing at faces, sharing smiles, and vocalizing with similar frequency, researchers reported online in the Journal of the American Academy of Child & Adolescent Psychiatry.

However, autistic children displayed fewer of these behaviors as as they got older, and from six months to 18 months the loss of social communication and skills typically became clear.

While doctors typically caught early signs of autism, the declines were more subtle than previously suggested and most parents (83%) did not report regression in the social behaviors and skills.

"These findings lead us to two major conclusions," Sally Ozonoff, PhD, of University of California Davis Health System in Sacramento, and colleagues wrote.

"First, the behavioral symptoms of autism spectrum disorder appear to emerge over time, beginning in the second half of the first year of life and continuing to develop for several years.

"Second, our most widely used and recommended practice for gathering information about symptom onset, parent-provided developmental history, does not provide a valid assessment of the slow decline in social communication that can be observed prospectively."

The article goes on to explain that researchers had, for many years, assumed that children with autism either exhibit symptoms very early on, or regressed in a dramatic fashion.  A third subtype, described most recently, included children who developed normally and then "stalled" in their development.  This new study, however, suggests that in fact many children may experience a slow regression which may not be obvious even to parents.

On a personal note, I found this study to be quite illuminating.  I've often looked back at photos and attempted to piece together the process by which our son "became" autistic.  It's never been obvious: there was no sudden loss of language or skills, yet somehow, between the ages of 18 months and three years, our son was no longer developing typically.  By age three, he was well behind his peers both socially and linguistically.

While this study doesn't really answer our question about our son, it does suggest that neither we nor our pediatrician were aware of subtle changes that may have occurred over the course of months.  Perhaps, with more finely-tuned developmental tests, this type of subtle change will become more easily recognizable.  With early recognition, of course, comes early intervention - and the possibility of a quicker and/or more effective response.

Youngest Infants May Help Pinpoint Progress of Autism originally appeared on About.com Autism on Thursday, March 4th, 2010 at 15:05:09.

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The National Autistic Society (NAS) welcomed a raft of new measures in the landmark adult autism strategy published today aimed at tackling the isolation, ignorance and inequality routinely experienced by the over 300,000 adults with autism in England...

The idea of a spectrum disorder is just now beginning to be understood by the general public.  In general, people get the idea that a person can be a little diabetic or very diabetic.  A little arthritic or very arthritic.  A little depressed or profoundly depressed.  But in all these cases, the symptoms are very similar; the differences relate more to the degree of the symptoms, and not to the symptoms themselves.

When it comes to autism, though, what does it mean to be "a little autistic" or "very autistic?"

I often find myself describing Asperger syndrome as "mildly autistic," just for simplicity's sake...  but in fact the description isn't really appropriate.  A person with Asperger syndrome may be high functioning (that is, verbal, bright, and capable of doing a great many things) - but that same person may have overwhelming anxiety, sensory issues or other symptoms that make ordinary activities painful or difficult in the extreme.  Meanwhile, a person with a PDD-NOS or "moderately autistic" diagnosis may be lower functioning (less verbal, less academically successful, etc.) - yet find it relatively easy to manage day to day engagement in the world.

As I talk with community leaders about including people on the autism spectrum in classes, camps, and other programs, they very reasonably want to know what kinds of accomodations are appropriate.  And I really do want to help.  But the more I explain, the more confusing the explanation becomes.

Q: "Do people with autism need quiet, uncluttered space?"

A: "Sometimes."

Q: "Do people with autism need visuals to help them understand concepts?"

A: "Sometimes."

Q: "Do people with autism generally want to be part of a group or team?"

A: "Sometimes."

How do YOU describe the autism spectrum?  Or do you just describe your child or yourself without worrying too much about the "A Word?"

Share your thoughts and suggestions!

How Do You Describe the Autism Spectrum? originally appeared on About.com Autism on Wednesday, March 3rd, 2010 at 10:50:23.

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Asuragen, Inc. announced the results of a collaborative study with scientists at the M.I.N.D. Institute at the University of California Davis evaluating a new PCR technology that reproducibly reports mutations associated with Fragile X syndrome (FXS)...

Scientists at the Queensland Brain Institute have uncovered a vital clue into how the brain is wired, which could eventually steer research into nervous system disorders such as Parkinson's disease and cognitive disorders including autism. It's long been known that growing nerve fibres, also known as axons, must make connections in the brain for it to function properly...

According to a story in the Associated Press:

One in four U.S. parents believes some vaccines cause autism in healthy children, but even many of those worried about vaccine risks think their children should be vaccinated.

This finding is based on a survey conducted last year by researchers at the University of Michigan; the article points out that this was long before the Lancet's retraction of Andrew Wakefield's influential 1998 study which appeared to link the MMR vaccine with autism.

Interestingly (at least to me), the article also goes on to cite a group of pediatricians who take a hard line on the subject of vaccines and parents who choose not to vaccinate:

A statement from a group practice near Philadelphia outlines its doctors' adamant support for government recommended vaccines and their belief that "vaccines do not cause autism or other developmental disabilities."

"Furthermore, by not vaccinating your child you are taking selfish advantage of thousands of other who do vaccinate their children ... We feel such an attitude to be self-centered and unacceptable," the statement says...

"We call it the manifesto," said Dr. Bradley Dyer of All Star Pediatrics in Lionville, Pa.

While I am not among those who believe vaccines are responsible for an autism epidemic, I do worry when mainstream pediatricians issue "manifestos" for parents or use terms like "selfish" and "unacceptable" to describe parents' concerns (even if those concerns are founded in media reports and not in science).

Surely pediatricians intend nothing but the best for their patients.  That being so, I understand their frustrations when they feel their recommendations are not heard.  But how can manifestos and name calling from community leaders  lead to anything but more of the same from those who disagree?

Pediatricians Take a Hard Line on Vaccines and Autism originally appeared on About.com Autism on Monday, March 1st, 2010 at 10:39:15.

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For the second time in as many months the Centre for Addiction and Mental Health (CAMH) has signed a licensing agreement with US-based Athena Diagnostics Inc. to market a new genetic test. The test was developed by CAMH scientist Dr. John Vincent as well as independent clinical researcher Dr. Muhammad Ayub. It is based on their research into genetic causes of intellectual disability...

In a letter to the Chairmen and Ranking Members of House and Senate Committees charged with oversight of the Department of Health and Human Services (HHS), the Coalition for Vaccine Safety (CVS) is calling for hearings to investigate HHS, the Centers for Disease Control (CDC) and other government agencies for failure to fully address issues of vaccine safety as intended by the ...

A new study by researchers from the University of Miami shows that maternal sensitivity may influence language development among children who go on to develop autism. Although parenting styles are not considered as a cause for autism, this report examines how early parenting can promote resiliency in this population...

A paper published online in Molecular Cell proposes that Methyl CpG binding protein 2 (MeCP2) impacts the entire genome in neurons, rather than acting as a regulator of specific genes. Mutations in MeCP2 cause the autism spectrum disorder Rett Syndrome as well as some cases of neuropsychiatric problems including autism, schizophrenia and learning disabilities...

Scientists have pinpointed how a key hormone helps animals to recognise others by their smell. Researchers at the University of Edinburgh have shown that the hormone vasopressin helps the brain differentiate between familiar and new scents...

This week, Autism Speaks - America's largest autism-oriented non-profit - announced its five-year anniversary and asked:

We want to hear from you - how has autism changed since 2005? What progress has been made in research, legislation and awareness? How has the autism community changed?

This question intrigued me; indeed, I have plenty of responses to offer, since my son was diagnosed with PDD-NOS in 2000, and I've been the About.com Guide to Autism since 2006. Over that period of time I've seen controversies rage, new leaders rise and fall, and the "invention" of the Green Vaccine and Neurodiversity movements. So far, I can certainly say it has never been boring!

But then it occurred to me that by asking "how have things changed?," we may be setting aside the reality that, every day, many new families are being confronted with the possibility or reality that their child (or they themselves) may be diagnosable on the autism spectrum. These folks (and you may be among them) are diving into a complex world of controversies and uncertainties - and it's up to us, the "autism veterans," to welcome them and make them feel that they've joined a real community of support.

So... please join me in welcoming anyone new to the world of autism. Before you dive in too deep, or get too overwhelmed with all the research, therapies and IEPs, take a few minutes to breathe.  Join the Autism at About.com Forum and ask questions.  And check out some of these articles written specifically for you!

• Tips for Parents New to Autism
• What If...? Getting Past Blame and Worry to Help Your Autistic Child
• Before You Drive Yourself Crazy Over an Autism Diagnosis
• Terrific Traits of Autistic People

Join the Autism at About.com Community on Facebook!

Are You an Autism "Veteran," or New to Autism? originally appeared on About.com Autism on Thursday, February 25th, 2010 at 12:13:12.

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When a gene implicated in human autism is disabled in mice, the rodents show learning problems and obsessive, repetitive behaviors, researchers at UT Southwestern Medical Center have found. The researchers also report that a drug affecting a specific type of nerve function reduced the obsessive behavior in the animals, suggesting a potential way to treat repetitive behaviors in humans...