Nov 19, 2013 9 Share

Gauging Skills


Illustration of a gauge ranging from very low to very high.
Thinkstock

One of the first things people ask me about my 21-year-old son Mickey is, “Is he high functioning?”

I hate that question.

Are they asking his IQ score? If he speaks? Whether he will be able to live independently? I don’t know how to answer.

How well does anyone function all the time? Isn’t it circumstantial? Mickey does well socially when he feels comfortable and safe with people he knows. He has learned to ask such appropriate questions as, “What did you do today?” or “How was your weekend?” although he has a limited amount of small talk in him. He still struggles to sustain a complex conversation. When he doesn’t feel like interacting, he’ll say, “Leave me alone, I don’t want to talk.” Not exactly polite, but still functional. But put him in a room teeming with noisy, unfamiliar people or loud music? He’ll be out the door so fast he’ll leave skid marks.    

All people are high functioning in some ways, less so in others. If you ask me to write an essay, I’d say—modestly—that I am fairly high functioning in that regard. But if you depended on me to rappel down the side of a cliff or navigate a raft through white water, you’d be putting your money on the wrong gal. You’d never make it out alive.

As students, we’re all expected to do well in every subject. In reality most of us are not good at everything. As we grow, we tend to narrow our focus. We specialize. We seek out work in areas where we can excel. Autistic or not, everyone has a mix of strengths and challenges.

If you can do calculus but can’t tie your shoes, are you high or low functioning? Does high functioning mean you can live independently but low means you can’t? Mickey can’t yet safely turn on the stove to cook for himself. But he is adept at making his own sandwiches and reheating food in the microwave. He won’t starve. Where does he fall on the continuum? Just because an autistic person can speak, make great eye contact or perform academically doesn’t mean that he doesn’t also have major social and behavioral challenges. Where is the arbitrary cut-off point between high and low? Who gets to decide?

When Mickey was 19 months old he saw his first speech therapist. She said he had a “mild” delay. Several months later, a different evaluator told us the delay was “severe.” She said, “It’s possible he may never speak at all.” Mickey hadn’t changed; he was still the same loving, lovable little boy with the megawatt smile. Nor had his challenges changed. What had changed?  The evaluator. 

During Mickey’s first year in a self-contained high school class, teachers gave him work that was too challenging. Mickey became disruptive. He distracted other students with jokes, off-topic remarks and such questions as, “Do brown cows make chocolate milk?” My husband and I asked for a Functional Behavior Assessment.

After observing him, the consultant they’d hired noted that Mickey was anxious and frustrated because the curriculum wasn’t geared to his needs. They’d expected him to comprehend ninth-grade reading materials even though he was reading at a fifth-grade level. She developed a behavior plan for the school to follow.

Privately, she told us, “When they called me to come in, they told me I’d be observing a low functioning child. But your son is verbal and socially connected. That’s not low functioning.”

It’s human nature to want to categorize people and create hierarchies, but labels can be dangerous. They can so easily be used to dismiss people, to see them as “less than.”

How should I respond when someone asks me where Mickey “falls” on the autism spectrum? His development isn’t linear; you can’t measure it with a yardstick or clock.

Maybe the only truthful answer to the question “Is your son high or low functioning?” is simply, “Yes.”



Comment Options

Anonymous

Liane - Well said, but my

Liane - Well said, but my take differs a bit. I think that people, whether they're internal or external to the autism community,  are "hard-wired" to constantly compare/gauge/assess and many have a natural, if clumsy at times, curiouslity, so the question doesn't bug me.  That is, unless their questions have some sort of "competitive" basis.  When I hear the old "high" v. "low" function stuff, I prefer to redirect the conversation the concept of level and types of supports my son needs (if it seems like it may be a productive dialogue.)  By doing this, one gets away from an inaccurate, put a dot on a line, understanding of autism to a more substantive discussion of the varied supports that are so sorely lacking for people all throughout the spectrum. In my son's case he needs many, and varied supports that are all fine topics to discuss.  For others on the spectrum, they may not have a huge list and the intensity of their needs may differ a lot, but that doesn't mean the ones they do need are any less impactful, 

Anonymous

This was a wonderful piece

This was a wonderful piece and it brought back memories of the many evaluations my daughter went throught when she was young.  I knew what her strengths and needs were...  but it never failed... every time I came out of one of those meetings with an evaluator, I always felt like so low...  like I was crawling on the ground.  It was so emotionally debilitating.  I guess the clinicians don't mean to be unfeeling but the 'labels' still hurt so much.  We just need to know and love and advocate for our kids, whatever their 'level of functioning' is...I also have the feeling that there is somehow a measure of fear in the question, "Is your child high or low functioning?"  I'm not sure how or why but people always need to cubbyhole or categorize others to feel more comfortable in their own world...  there is a fear, mistrust or hesitation, at the very least, of differently abled people, which is so unfair.Thank you again, Liane, for your honesty and compassion!

Anonymous

Thank you

Thanks for posting this. It really was helpful for me to read. I have been struggling with a low score on an IQ test taken by my son, whom I know to be bright and intuitive. The categories that exist are not appropriate for my son. I am starting to realize and accept that fact.  

Anonymous

Only one resonse to this

Only one resonse to this thought provoking essay: "Yes."

Anonymous

High Functioning

Sadly in the many years I did mental health and homeless advocacy there was a prevailing attitude amoung providers that all "clients" were low-functioning. I, being Autistic, fought hard against this attitude. But I was living in a farily rural county in California. It wasn't until I moved to San Francisco that was treated as an equal but almost every service provider I have come across. Low functing and high functioning are terms that have come from service providers. And they have no real definitions. They all need to be lectured and reeducated abotu how destructive these phrase can be when seeking services. And of course they can be demoralizing for those of us that are high functioning in in our intelligence levels.

Anonymous

high or low functioning ?

I guess high functioning autism technically means autism in someone who has an IQ of at least 85.But what does that matter ? It means my son was clever enough to know when mom said 'no' call Grandma.It does not mean he has the intelligence of Alan Turing and would solve the next enemy code and win the next war for the Allies.It has lead to some interesting questions. My favorite 'Mom, Brittany Murphy died in the shower. Does that mean they will bury her naked ?' But the reality of living in the real world means he is low functioning. Can't cross a street as he has no road sense.Can't tell fantasy from reality - thinks Teddy Roosevelt is President as he was in the movie 'Night at the Museum.'He repeats and repeats scenes from movies so that he could never concentrate to hold a job.so yes, high functioning and low functioning - like all the rest of us !    

Anonymous

very thoughtful

I have struggled with this question, too, Liane.  We were told early our son would have scattered skills and 20 years later, he has scattered skills...as do I. Wonderfully thoughtful essay, as always. And I love the brown cows/brown milk query! 

Anonymous

This was such a great

This was such a great response to that question and believe me, we've received similar ones over the years...I hate labels too and always have. I love how you relate the high/low functioning debate to other types of skills that some of us excel at and some of us don't...perfect way to describe that there is no answer to your question.

Anonymous

Gauging Skills

I almost NEVER write in response to articles, but I LOVE, LOVE, LOVE this article. I am grappling with this exact issue. My daughter is 16 and has very varied skills. In Math (minus word problems) she is great. Reading, yeah, not so much. In pre votech she is doing very well. In speech, again, not so much. However, she does very, very well in things that she knows what to do and are not changing. She can set an alarm, get ready by herself, cook, do laundry etc. She cannot read an entire page of non fiction and describe it in her own words and may never be able to. This year I was told by her reading teacher that I had been lied to all along and she was very, very low functioning and I needed to face that. May I also say that my daughter was such a nervous wreck in her class that she visibly shook. She is the very first person who has ever worked with my daughter to suggest that, but she was extremely forceful when she said it and it has planted a seed of doubt in my mind that has been germinating ever since. But, just as you say, we are all good at some things and struggle with others. This article really spoke to me. Such a balanced view.