In regard to functioning labels – Autism

Jan21

Autism

Functioning Labels & Autism

When we use functioning labels, we’re telling the world a half truth, and our children are often held to certain standards they cannot always rise to meet, or held down by expectations set too low.

I used to use the term high functioning when talking to people about my boys, both at varying degrees on the autism spectrum, until I slowly began to realize I was setting them up for certain failures and disappointments in doing so.

High functioning does not mean their lives aren’t difficult and confusing in many ways. It does not mean they do not struggle, in fact, it minimizes their struggle.

The term low functioning in regard to others on the spectrum can lead people to expect less than they should from them. The term low functioning does not reflect how capable someone may be, in fact, it minimizes their capabilities.

In my mind, I was trying, in the simplest terms, to tell people my children had many abilities some on the spectrum may not. They speak, though neither developed spontaneous, conversational speech until they were around five years old.

They are able to express themselves beautifully and articulately, but it took a lot of hard work before they could, and while they still struggle at times with the semantics and pragmatics of speech, they have a voice.

They struggle with sensory issues and learning deficits, they battle anxieties and obsessive thought patterns and routines. Years of special education, speech, occupational, and physical therapy have filled in many of the gaps and given them tools to self regulate and maintain what they have learned. Most of the time.

While they can remember complex ideas they often need reminders and help to accomplish the simplest of tasks. Some days they are high functioning. Some days they are in the middle, and some days they are low.

Autism is a spectrum in the broadest sense, encompassing all levels of functionality for every individual diagnosed, there is a vast spectrum within each one of them.

My boys are now adults, amazing, wonderful, young men with many gifts and abilities, but they are not yet capable of being on their own. They may never be fully able to without some sort of assistance, maybe they will. I do know that when they spread their wings I am not going to clip them by giving them a label that tells the world they can soar when they are just learning how to fly . . .

Crystal R. Cook

14 thoughts on “In regard to functioning labels – Autism”

  1. I did my dissertation on a topic related to Autism and have volunteered at different times in my life at institutes for autistic children.

    They are, by far, the purest and most beautiful human beings I have ever met in my life. Innocence personified, no other experience has touched me as deeply as the moments in which they have expressed love to me….

    So beautiful, so innocent, so pure….

    I salute and respect you for raising your children with love and affection instead of shunning them as many still do.

    Stay Strong.

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  2. Thank you . . . I wish it was easier for people to understand, so many opinions and judgments coming from all directions. It can be frustrating and at times heartbreaking. I honestly believe if more people start listening, really start listening, to what those on the spectrum have to say it could one day be an easier conversation.

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  3. I agree with Lisa. Labels are a double-edged sword. Right now, my family needs labels. And I’m not afraid to use (some of) them. But I agree with everything you said here. This is a complex issue.

    I love this: “High functioning does not mean their lives aren’t difficult and confusing…” The spectrum is just that — a spectrum. It varies so much. How can we not try to make it as simple as possible for people to “understand” or as short as possible as way of an explanation?

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  4. Crystal, this is beautifully done. Those labels are such a double-edged sword, aren’t they? We need them to get our kids the help and understanding they deserve, and yet so often that backfires and ends up doing harm, mostly to their self-esteem.
    “Some days they are high functioning. Some days they are in the middle, and some days they are low.” – Isn’t that true of every one of us!

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