Low Functioning Autistic Persons Remain Invisible on CNN and in the DSM-5's New Autism Spectrum Disorder

Elizabeth Landau, a CNN Health writer/producer, mentions briefly the DSM-5's New Autism Spectrum Disorder, in a report on the organizational changes in the DSM-5 in Psychiatry 'bible' structure overhauled. Ms. Landau's discussion of changes in the DSM autism classification focuses exclusively on the impact the formal inclusion of Asperger's syndrome in Autistic Disorder will have on persons with Asperger's and parents of children with Asperger's.  No mention is made of the impact on that the changed definition of autistic disorder will have on the invisible autistics, those with actual autistic disorder, often low functioning, with intellectual disabilities, who are likely to live their adult lives in some level of residential or institutional care:

"This organizational framework is trying to emphasize that we don’t have strict divisions between disorders," Regier said.

For instance, Asperger's syndrome, a high-functioning form of autism, instead of being its own diagnosis, would now fall under the broader “austism spectrum disorders.” This move has some parents unhappy because "autism" sounds scarier than Asperger's, which has taken on its own identity in that community, and because children with Asperger's have specific educational needs that are different from kids with more severe autism.

But the association has heard from other parents frustrated that their children with Asperger's are denied special education benefits reserved for autism, Regier said. And biologically speaking, Asperger's is a form of autism, doctors say.

CNN, of course, is not unique in excluding mention of those with autistic disorder, particularly those severely affected by autism disorders, while discussing changes to the DSM autism diagnostic category.The process started in 1994 with the DSM-IV. The DSM-IV revision included a de facto inclusion of Asperger's with Autism in the Pervasive Developmental Diosrders.  The new revision completes that process and waters down further the requirements for a diagnosis of autism. 

As previously noted by CDC autism expert Dr.  Marshalyn Yeargin-Allsopp the DSM-IV definition change, amongst other accomplishments, lowered the rate of persons with autism AND intellectual disabilities ... by expanding the definition of autism to include persons who were by diagnostic definition not intellectually disabled.  Autism's "vast majority" to quote Dr. Yeargin-Allsopp became a large minority.  With the new changes more persons without intellectual disability will be diagnosed as autistic under the watered down definition.  The APA will have taken another large step toward lowering the rates of persons with autism and intellectual disability, not by helping to improve the condition of those persons but by redefining them to a  smaller corner once again. 

It will be easier for APA members, and other health professionals,  to ignore low functioning autistic persons as they become a smaller and smaller percentage of the DSM's New Autism Spectrum Diosorder.  It will  also be  easier for Autism Speaks to continue its feel good "autism" fund raising by promoting  the careers of very high functioning persons with Aspergers, like John Elder Robison and Alex Plank, as the faces of autism when their diagnoses are officially changed from Aspergers to Autism Spectrum Disorder. And it will be easier for Autism Speaks to retain its status as Autism Without Intellectual Disability Speaks.

Meanwhile the vast majority of those currently diagnosed with Autistic Disorder, those who also have intellectual disabilities, those with low functioning autism disorders, will become even more invisible to the public eye. 

Bruno Hache, A Person With Asperger's, Tells His Story

Bruno Hache

On Thursday June 5 I was one of the keynote speakers at the Jonathon Howard Run the Dream event in Fredericton, New Brunswick. Mr. Howard is doing a remarkable thing; taking most of a year of his life to run across Canada for autism. The musical entertainment was excellent including Cathy Hutch and BJ McKelvie performing "I'm In Here".

The highlight of the night for me though was a talk given by Bruno Hache, (photo above), a young man with Asperger's, and an outstanding, positive, attitude, who is very good at public speaking, has a great sense of humor and was very informative and entertaining. I asked Bruno if he would consider sending me some information about himself to post on this blog site and he has kindly obliged.

Bruno in his own words:

*K-8 years:

* I vaguely remember in my K-4 years being diagnosed as extremely gifted, and having absolutely no motor skills. PE and music class were both nightmares. Academically, I would excel in English, French and the Sciences, and fail miserably at Math and anything numbers-related. I had very few friends, spent most of my recess alone or with the "geek" crowd talking video games, the space program, or anything that wasn't typical of an 8 year old.

* High School:

* This period of life, for any adolescent is supposed to be a period of intense growth and development. I didn't. 9th grade was a living nightmare. I was neglected as a "geek", a "nerd" and constantly teased and bullied by my classmates. I entered depression. Many visits to the school psychologist, guidance counselors, Mental Health workers led to depression. Further studies by a psychiatrist led to "Asperger Syndrome". The next two years of high school, for me was trying to find out what exactly Asperger's is, and trying to learn what I could do, because my psychiatrist, at the time, was not exactly knowledgeable of the fact. The school psychologist had absolutely NO idea how to pursue with an adolescent with AS.

I remember spending nights "Googling" for strategies on coping with Asperger's, and also trying to explain in layman's terms to my parents what being an Aspie is.

*College Years

*I was forced, in 2001, to quit High School due to depressive moments. The next few weeks after, I decided to pursue my talents. I managed to take a Computer Technician course at a private college (Academy of Learning) and eventually graduated from this program in December, 2001. I realized that having no High School diploma would get me nowhere. I subsequently pursued my GED, obtained it in May of 2002. I was 17 years old at the time, and trying to enter the adult working world was a bit hard. I got hired by Canadian Tire, in Bathurst, as an Auto Parts Clerk (my second passion) and then worked there for a few years.

Deep in my heart, since I left high school, I have always wanted to work with special needs children. I have known that there was very little support given in my territory at the time (Bathurst, NB). I took the leap in the spring of 2003 to apply at the University of New Brunswick to enter their Bachelor of Arts/ Elementary Education program. I was accepted! Fall came, and I had given the opportunity to meet an amazing lady called Patricia Kirby, who works at the Student Accessibility Center. She had just completed studies on Asperger's Syndrome. She helped me greatly discover who I am, and what I want to do through my first two years. She managed to explain to my parents -and also clarify to them what AS is. I still can't thank her enough to this day!

*Yesterday, Today and The Future

*I was forced, due to financial and health reasons to leave UNB and pursue full-time employment. Fast-forward to the spring of 2007. I was still employed in the retail sector, and officially ready to move forward. I enrolled at the CompuCollege School of Business in Moncton. I have recently graduated with an 85% and am working full-time at Canadian Tire as a retail floor manager! I have learned, with support from Ms. Kirby, and various sources, how to cope with AS, and getting to know my strengths and weaknesses. I've learned that if you exploit your talents, you will succeed.

I am currently an autism advocate, a "big brother" to two Asperger pre-teens in the Bathurst, NB area. I am helping them transition from middle school to high school, and doing my best to improve their social life. I am also a volunteer with Autism Consultants NB as an Asperger Spokesperson.

Much of my spare time is spent on autism advocacy, research, and volunteering to the cause. I do, however, spend quality time with friends, family and my own social life.

The future: Given my past experience with AS in the school systems, and with my skills - how I've coped with it.. I am determined to pursue the Autism Intervention Worker Program at UNB while working full-time, and eventually open a private practice, where I will have the opportunity to travel to remote areas in New Brunswick to help with autistic children. Many parents cannot afford to drive to major centers and this is where I will come handy as I plan to travel to their locale.

Without support from my family, friends and co-workers, I would not be where I currently am today. I will forever be thankful for this. To anyone with a child who has Asperger Syndrome: Work on his or her talents first and foremost. Develop their social skills based on them. That's how I got where I am now.

autism

Autism Disorder Versus Asperger's Syndrome

The Autism Society of America has published a good overview of Autism Disorder and Asperger's Syndrome on TylerPaper.com. The article contains a basic description of both Autism Disorder and Asperger's Syndrome and helps distinguish between the two similar but distinct disorders:

What distinguishes Asperger's Syndrome from autism is the severity of the symptoms and the absence of language delays. To the untrained observer, a child with Asperger's may seem just like a normal child behaving differently. They may be socially awkward, not understanding of conventional social rules, or show a lack of empathy. They may make limited eye contact, seem to be unengaged in a conversation, and not understand the use of gestures.

One of the major differences between Asperger's Syndrome and autism is that, by definition, there is no speech delay in Asperger's. In fact, children with Asperger's frequently have good language skills; they simply use language in different ways. Speech patterns may be unusual, lack inflection, or have a rhythmic nature or it may be formal, but too loud or high pitched. Children with Asperger's may not understand the subtleties of language, such as irony and humor, or they may not recognize the give-and-take nature of a conversation.

Another distinction between Asperger's Syndrome and autism concerns cognitive ability. While some individuals with autism experience mental retardation, by definition a person with Asperger's cannot possess a "clinically significant" cognitive delay, and most possess average to above-average intelligence.

autism