There are many perceptions about autism that need to be re-calibrated, and there has been good progress in terms of autism awareness and understanding.  But in terms of equal rights for children on the spectrum, it’s just a mess. For example, why are children in elementary school arrested for lashing out at teachers and paras who try to restrain them?  Wouldn’t most parents tell their children to fight and run away from their attackers??  But in Missouri, Arkansas and other US states, children as young as 6 or even 11 years old who resist restraint are arrested, often for felonious assault, without a second thought. 

What’s even worse is the way school districts censure so-called typically-developing children who prey on autistic kids.   For example, when three children recently conspired to trap an autistic elementary school student in a bathroom (two boys stood guard while the other boy sexually assaulted the little girl), the school district’s statement was “this is unnatural behavior…and we are considering legal action.”  What?!!!  Rapists, pint-sized or otherwise, are considered for legal action but children who resist painful and frightening restraint are arrested on the spot??!!  What’s wrong with this picture?

And don’t even get me started on services. I’ve had to threaten, cajole and nag to get my son OUT of certain services that he has outgrown, while a dear friend of mine is considering divorcing her loving husband of 25+ years to tap into his 401K plan so that she can have the funds to provide the services that her child needs, but her school district won’t provide. WHAT’S WRONG WITH THIS PICTURE??!!

What’s in a name?  Apparently, everything, if you are a person with an autism or Asperger’s Syndrome diagnosis.  At issue is whether or not to use ‘autistic’ as an adjective or to keep the traditional PeopleFirst language of an ‘individual with autism.’ The reasoning for both have great merit.

PeopleFirst fans would claim that a person would never call an individual with cancer a ‘cancerous’ person, so why wouldn’t the diagnosis always be listed last? Thus, a person with a cognitive disability or a person with a cold or a person with an autism spectrum disorder deserves the same respect by placing the name of the individual first.

To their credit, the neuro-diversitivists who prefer the term ‘autistic’ agree that PeopleFirst language is courteous and respectful for persons with significant disabilities. However, many neuro-diversitivists, particularly those with high-functioning autism or Asperger’s Syndrome, prefer the term ‘autistic’ because they believe that their differences are strengths, and are not related to a disorder. Further, they would like to see Asperger’s removed from the DSM-IV classifications for autism spectrum disorders, because of the societal stigma, misunderstanding and discrimination that is generated by the diagnosis.

On a personal level, my son doesn’t like to be called ‘autistic’ or ‘a child with autism,’ but he doesn’t mind using the term autism to explain his differences. My adult Asperger friends prefer the term autistic.  As a writer, an advocate, a friend and a mother, I’m stuck.  I want to respect everyone, and I care deeply about their feelings, but I’m not exactly sure what to do. PeopleFirst language can be unwieldy, so it is easier to use the adjective when writing, but for all the individuals who have worked their tails off to remove the R word from government organizations and to implement PeopleFirst language, I feel like a traitor for abandoning it.

Recently, I saw a wonderful brochure about people with disabilities finding ‘real jobs’ in our state.  The term ‘autism’ was never used.  Instead, the individual was described as having a ‘learning disability.’ I think the authors were on to something.  Perhaps when we talk about challenges, we could be much more specific, such as an individual with special sensory needs or speech or social delays.  (Or in my case, as I sit here with a sprained ankle, perhaps individuals with balance issues! ) Kudos to the state of Missouri Planning Council for Developmental Disabilities for  creating a humane, respectful and much more descriptive solution.

But more importantly, I think we need to do a much better job of  recognizing and celebrating an autistic person’s strengths.  Our kids, our friends, our colleagues and our relatives with autism diagnoses have abilities — attention to detail, memory, creativity, musical, artistic, mathematical and other skills — that are enviable, admirable and valuable to society.