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About Autism  
Autism

Vaccine Court Once Again Rejects Link to Autism - 2010-03-12T16:55:02Z

A second round of Vaccine Court cases were decided today, once again denying parents' claims that their children's autism was caused by vaccines.  Last year, the Vaccine Court denied three cases which claimed that a combination of the MMR vaccine and thimerosal (a mercury-based preservative) in other vaccines caused autism.  Today's plaintiffs claimed that mercury in thimerosal was the only cause of their children's autism.

According to Reuters:

Vaccines that contain a mercury-based preservative called thimerosal cannot cause autism on their own, a special U.S. court ruled on Friday, dealing one more blow to parents seeking to blame vaccines for their children's illness.

The special U.S. Court of Federal Claims ruled that vaccines could not have caused the autism of an Oregon boy, William Mead, ending his family's quest for reimbursement.

In essence, the Grand Masters of the Vaccine Court made it clear that they saw no credible evidence to support the claim that the defendants' regression and ensuing autism spectrum diagnoses were caused by vaccines.

• Autism and the Vaccine Court
• The Vaccine Court: a Primer
• Introduction to the Vaccine/Autism Controversy

Vaccine Court Once Again Rejects Link to Autism originally appeared on About.com Autism on Friday, March 12th, 2010 at 16:55:02.

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Autism and Toilet Teaching: Can You Help? - 2010-03-12T09:34:39Z

A mom writes:

I have a "BIG" or at least to me it is a big question regarding my daughter with Autism.  She is 4 and I am still trying to get her potty trained. This year she is finally realizing that she does not like being wet so she takes her own pull up off. I am just not sure what to do next. (She will be starting Kindergarten this fall (Full-Day) and need her to understand. (I have tried the chart thing but had to take her in the bathroom every time, did the every 2 hours (made her frustrated most of the time). Any help or ways to find an article would be appreciated.

I do have an article on the subject of toilet teaching, and there are parent suggestions there as well. But I have to tell you, it's really idiosyncratic. My son didn't potty train till he was 4 1/2 - just wasn't interested, I thought. Then one day he stood up in the tub and started to pee, and I lifted him out of the tub and onto the toilet where he finished going. From that day to FULL toilet teaching was THREE WEEKS. No idea why... just luck of the draw, and readiness I guess!

If there's any topic that parents know a lot about, it's toilet teaching.  So please share your tips and hints.  You can add them here on the blog, or add your thoughts to the permanent Reader Answer article associated with my step by step guide.

Autism and Toilet Teaching: Can You Help? originally appeared on About.com Autism on Friday, March 12th, 2010 at 09:34:39.

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Diagnosis Asperger Syndrome: Have You Seen "Parenthood" on NBC? - 2010-03-12T07:45:24Z

It's rare that I feel guilty about NOT watching TV.  But as the media buzz about NBC's Parenthood increases, I realize I really SHOULD have Tivo'd the last few episodes.  Apparently, the series has absolutely nailed the experience of having a child diagnosed with Asperger syndrome, an autism spectrum disorder.

So in the category of "better late than never," I'm planning on watching Parenthood this weekend.  Meanwhile, though, you can add your thoughts about the series to this blog...  or check out the blogs and reviews that other About.com guides have offered.

And if you're among the many who just discovered Asperger syndrome through the series and want to know more, I invite you to explore some of these articles on the ups and downs of Asperger syndrome in both kids and adults:

• Is It Asperger Syndrome?
  People with Asperger's Syndrome may have a tough time with social cues and small talk. They may also be very intelligent, and highly successful in their own areas of interest. Could you or someone you love be diagnosable with Asperger's Syndrome?
• What Are the Diagnostic Criteria for Asperger Syndrome?
  What are the diagnostic criteria for Asperger syndrome? Here are the specific criteria as laid out in the official DSM-IV-TR diagnostic manual.
• How to Explain Your Child's Asperger Syndrome
  Asperger syndrome is invisible, at least some of the time. At other times, though, symptoms rise to the surface. When should parents tell their children that they have Asperger syndrome? When and how should parents explain Asperger syndrome to other adults?
• Adults and Asperger Syndrome
  Asperger Syndrome, a very high functioning form of autism, may not be diagnosed until adulthood. Could you or an adult in your life have Asperger Syndrome? How can you find out? What should you do next?

Diagnosis Asperger Syndrome: Have You Seen "Parenthood" on NBC? originally appeared on About.com Autism on Friday, March 12th, 2010 at 07:45:24.

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Supreme Court to Decide Whether Vaccine Manufacturers May be Sued - 2010-03-10T07:29:03Z

According to the Associated Press, the Supreme Court has agreed to hear a case which will decide whether families may sue pharmaceutical companies for damage caused by vaccines.

The justices on Monday agreed to hear an appeal from parents in Pittsburgh who want to sue Wyeth over the serious side effects their daughter, six months old at the time, allegedly suffered as a result of the company's diphtheria, tetanus and pertussis vaccine.

The 3rd U.S. Circuit Court of Appeals in Philadelphia ruled against Robalee and Russell Bruesewitz [the plaintiffs], saying a 1986 federal law bars their claims.

That law set up a special vaccine court to handle disputes as part of its aim of insuring a stable vaccine supply by shielding companies from most lawsuits.

Wyeth, now owned by Pfizer, Inc., prevailed at the appeals court but also joined in asking the court to hear the case, saying it presents an important and recurring legal issue that should be resolved.

USA Today describes the case as follows: "According to the lawsuit, Hannah Bruesewitz was a healthy infant until she received the vaccine in April 1992. Within hours of getting the DPT shot, the third in a series of five, the baby suffered a series of debilitating seizures. Now a teenager, Hannah suffers from residual seizure disorder, the suit says."

While this specific case does not relate directly to autism, the autism community will clearly be deeply interested in the process and outcomes.

Supreme Court to Decide Whether Vaccine Manufacturers May be Sued originally appeared on About.com Autism on Wednesday, March 10th, 2010 at 07:29:03.

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Autism Speaks Appoints Autistic Self-Advocate to Board - 2010-03-09T13:35:47Z

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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Are Siblings of Autistic Children at Higher Risk of Developmental Issues? - 2010-03-09T10:23:50Z

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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Announcing New Resources on Autism and Higher Education - 2010-03-09T07:15:42Z

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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UK's New Strategy for Adults with Autism - 2010-03-06T07:42:22Z

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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Youngest Infants May Help Pinpoint Progress of Autism - 2010-03-04T15:05:09Z

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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How Do You Describe the Autism Spectrum? - 2010-03-03T10:50:23Z

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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