I know, I know Asperger Syndrome (AS) is not an official diagnosis any longer. Instead, everyone with Autism are on the spectrum but some are at different levels on the spectrum. Today, people with what would be traditionally called Asperger’s are now called “high functioning” Autism or you would hear people say they are on the higher end of the scale. When I hear that I think of a ruler

Think about it… How high on the “scale” is my child? If 6 is the halfway mark does high functioning mean anything over 6 or over 8 or is it just between 11 and 12??? So completely frustrating. Then when you google it I find things like:

• What distinguishes Asperger’s Disorder from classic autism are its less severe symptoms and the absence of language delays. – Autism Society
• “High-functioning autism” isn’t an official medical term or diagnosis. It’s an informal one some people use when they talk about people with an autism spectrum disorder who can speak, read, write, and handle basic life skills like eating and getting dressed. – Web MD
• But people with autism are still very different from one another. So, to clarify these differences, the DSM-5 also includes functional levels. People who are bright and verbal are generally given the diagnosis of level 1 ASD. – Very Well Health

Or my favorite:

• High Functioning Autism is neither an official diagnosis nor is there an agreed-upon definition of what the term means. – Very Well Health

Ummm… if they do not know what it is, how can I? Anyway, I digress. My point here is that if Autism is a spectrum disorder with people on both ends of the spectrum their services need to be different and they are not. Even when I have engaged in services for children on the “higher end of the spectrum” there is a very wide range of abilities.

Here are the challenges as I see them:

1. Asperger’s children appear neuro-typical yet they are not
2. Most of the services available (in Delaware) are geared towards lower functioning autism
3. The differences even in the classification of ASD 1 are so varied that it really is individual.
4. We have tried to sign Robbie up for social classes that are for ASD 1 children. The problem is he is the highest functioning in the class. What we really need is a social class with Neuro-typical kids so he can learn from them versus them learning from him. Or worse, him learning from the lower functioning and ending up having more issues then before attending.
5. I reach out to Autism Society of Delaware – no luck. We have tried to attend autism events – we are fish out of water
6. School also struggles. Again, he appears neuro-typical so when he has outbursts “out of the blue” for things like over stimulation no one knows how to handle it.
7. Recently we have found ourselves in a very difficult situation where we needed very high level services and therapy from the state for our whole family. We are receiving 10+ hours a week and nothing is changing because the people, with all their good intentions, do not know how to help us.

I know I should not complain. I know that I should be thankful our son is high functioning but he still needs help and is not getting it and that is just not right! Something has to change. Does anyone have any good services that they are getting and can share?