What Should I Say?

More often than not the first thing somebody says to me when they find out my son has Autism is “Where is he on the Spectrum” or “Is he high-functioning?” Speaking only for myself, as a parent neither of these questions has an easy, or comfortable answer – and even if they did I don’t believe the individual(s) asking would understand. It’s my belief these questions are asked because people don’t know what else to say, and I’m hoping this will help change that.

Yes, Autism is a disorder that has a “spectrum”; but the DSM-V doesn’t provide a band we can point to and say our son/daughter is here. Often times the diagnosis of Autism comes with accompanying intellectual disabilities, as is the case with my son; or other disorders. The idea of a spectrum is, in my opinion, really only helpful to physicians and insurance companies trying to prescribe and pay for the proper treatments.

Generally, high functioning Autism applies to people with an IQ higher than 75. Using this definition, my answer has to be “no, my son is not high functioning”. However, if you take a more general approach, looking at how self-reliant people with Autism are; then my answer would be “yes”. My son cooks his own dinner, self-regulates all aspects of his personal hygiene, provides me with a weekly grocery list, puts laundry away and makes his bed every morning – to list just a few of his independent living skills. I would argue that at 17 he is much more “high-functioning” than many of his peers without a disability.

So what should people say/do? In short – nothing different than you would if I told you I had a son, period. Speaking for myself, if I disclose my son has Autism I’m not looking for sympathy – rather I’m hoping to explain behaviors that may seem “off” despite my son having no visible disabilities. I will also disclose his diagnosis to help explain why he will not graduate at 18, instead staying in school until 21.

Frankly, I feel the sooner we as a society stop taking special notice (not the same thing as providing accommodations) of individuals with disabilities the better. I acknowledge this is will be a challenge, because despite this being the 21st century race and sex are still an issue for some people. But I’m optimistic – I really believe most of us are trying to do the right thing, and with these particular questions are asking because people are uncomfortable and are trying to fit the information into their available models. With time, patience and education I know our models will expand; in the interim I ask everyone to stop themselves before asking about the disability, and instead focus on the amazing individual him/herself.

I am NOT finding fault or placing blame with anyone. This is not meant to be offensive, and if it makes you uncomfortable or angry; I would ask you to explore the “why”.

 

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Author: Eric Jorgensen

I am a retired, widowed, disabled veteran who has a son on the Autism spectrum. I have learned, and accepted, I am owed nothing. I'm a proponent for people taking responsibility for their own actions, and making changes to their circumstances if they're not happy. My mission is to help people help themselves, by raising awareness of resources available, pointing them in the right direction; and being a coach, mentor, cheerleader. I've founded the Christine Jorgensen Foundation - which will pay for therapies (speech, physical, occupational, etc...) for those that have been declined by insurance or need more than approved for - on a referral only basis; and Special Needs Navigator - a for profit company to help individuals and families find their way through the disability resources labyrinth.

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