It's All Okay

Just a mom blogging about life with an autistic child.

Location: Canada

I'm a stay at home mom with two boys. Patrick is my youngest and has ASD.

Friday, February 23, 2007


I've never liked talking about functioning labels. High-functioning, low-functioning....who's to decide. It all seems so arbitrary and somehow, wrong.

Three times in the past week someone has mentioned this in relation to my son. The most recent was his neurologist. She noticed a marked improvment in his behaviour and "socialness" at his recent appointment. I remember, before the autism diagnosis, her wondering aloud about ADHD. As she finished her observations she said something along the lines of "that's wonderful he's doing so well, he must be high functioning."

Why must he be? He certainly wasn't a year ago. Can't children on the lower to middle parts of the spectrum make large improuvments without being considered "high functioning"? And when do they get that label anyway? When they're closer to "normal"? Is there a known line they pass in their development? What if they're in the lowest percentiles in some areas and higher in others?

It's so confusing and unnecessary. Patrick's not high or low functioning. He's Patrick. He's very verbal. He doesn't always understand input and we struggle sometimes to make him understand us. His output isn't always "appropriate". He has sensory issues. He's slowly improving socially. He shuts down sometimes for no reason. He's got some behaviour that is worrysome. He used to self injure. He wanders. He doesn't understand danger. He can't answer why but he's learning to ask why.

But what I've described is Patrick today. Patrick one year ago was very different. I'm sure Patrick one year from now will be very different.

I don't get it. What's the point? Does labelling children high functioning somehow make some people feel less "icky" around autism? Nobody has ever said, in my hearing anyway, "gee, he's having so much trouble, he must be low-functioning".

I don't know the answer. I don't know what category Patrick falls into nor do I care to be perfectly honest.


Blogger MileMasterSarah said...

I hear this so often: “Sandis is so high functioning, you must be so grateful.” I don’t know how to respond to this. Sandis is extremely verbal and he can talk your ear off. He knows big words. Sandis LOVES children and actively seeks them out for play. These are his strengths, and looking at autism, they are huge strengths. Sandis also has very definite weaknesses. He has no sense of personal safety, he has absolutely no impulse control, he has trouble responding appropriately in almost all situations, and his sensory needs are overwhelming to say the least. Is he high functioning because he can talk up a storm or is he low functioning because he has not completely mastered toileting and can’t seem to manage most daily functional living skills without 1:1 attention? I can’t answer that. I can’t say one thing because it disregards the other. I’m with you on this one, I don’t care for either term.

Fri Feb 23, 11:23:00 AM 2007  
Blogger mcewen said...

Hmmm - well I'm glad that anything 'negative' if it were ever said, was out of ear-shot. If one ever hears such things [naming no names of course] it is, you heart stops beating and you are frozen to the spot, incapable of functioning.
Anyway, I try and think 'label=services,' a little mantra to drive off the dross and the mind waves.
Have a super dooper weekend.
Cheers dearies.

Sat Feb 24, 07:18:00 AM 2007  
Blogger Club 166 said...

I think this is something many of us run into. It would seem that most often "high functioning" is equated with verbal language. Hardly the end all and be all of autism, as there are many "low functioning" autistics that communicate very well with keyboards and/or speech synthesizers, and many "high functioning" autistics that lack basic skills for independent living.

In our case I feel that Buddy Boy (7 year old-PDD-NOS) being verbal and perceived as "high functioning" has led to a refusal of needed services, and 2 suspensions from Kindergarten last year.

Mon Mar 12, 01:22:00 PM 2007  
Blogger Mom without a manual said...

There is so much misconception about autism in the community. I've had one lady ask me several times, "What exactly about him is Autistic". It is so frustrating.

Apparently, in her eyes, because he is verbal he can't be autistic. Although if she actually tried to talk to him she would realize that he is only interested in talking to her about Buzz Lightyear.

I am so sick of the "high/low functioning" label. I agree with Club166 also regarding issues getting services. Also, in my experience, we can be high functioning on any given day and the lowest of low on another day! And that describes me as much as my autistic child!

Tue Mar 13, 08:30:00 AM 2007  

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