ASD and functioning labels

[macchiatto]

This may be a repeat from previous posts, but since the official Dx is relatively new to us I'm paying more attention now. I just tonight was talking to a counselor friend about Leo who asked, "Ah, so he's pretty high functioning?" ... and then another ASD mom posted this:

blog.theautismsite.com/functioning-labels/

I appreciate this quote from this article, "In the wise words of Adam Walton, “Mild autism doesn’t mean one experiences autism mildly…it means YOU experience their autism mildly. You may not know how hard they’ve had to work to get to the level they are.”

That really hit home for me; it's how I feel about Leo, since I think school especially (and probably a lot of our friends if we were to let them know about his Dx) don't really fathom all the many hours of therapy and therapy homework and effort that has gone into Leo being where he's at now.

[auntie]

Some historical perspective on the label as it was told to me by both DS's dev pedi and his psychologist. One of the few concepts on which they agree.

Back in the day, when ASD was thought to be a very rare condition, the vast majority who were dxd with autism also had significant intellectual disability as well (what used to be called MR/IQ below 70): this was the classic Kanner's Autism presentation. Very rarely, clinician would identify individuals who had all of the core deficits associated with autism except that they had average or higher IQs. Thus, the distinction was made between low functioning autism and high functioning autism (HFA). In 1994, a further distinction was made, in the DSM-IV, between HFA and Aspergers Disorder. Both share an average IQ or higher (so both high functioning)  with Aspergers being reserved for those who have the core deficits of ASD but without any delays in language or adaptive skills around self care, etc.

By the time DS was dxd in 2000, doctors felt that about 1/4 of those with ASD had average or higher IQs. These days, it is thought almost half of all children with ASD have an IQ above 85, about 25% have a borderline IQ and about a third have IQs below 70. One thought is that the increase in the number of people with average+ IQs who have autism is greater awareness of the condition, especially in girls. Years ago, it was thought that girls with ASD, as a group, had much lower IQs on average than boys with ASD. I suspect, more bright girls went undiagnosed skewing the averages. 

Over time, lay people glommed onto the term and its meaning morphed. Most people think "functioning" refers to how well a person with ASD navigates the world. Clinicians reference degree of atypicality and impairment when describing how well a person with ASD is able to make their way in the world and the degree of support they require.

Unfortunately, higher IQ doesn't always translate into successful independence as an adult. I have a dear friend whose son is brilliant. He's working as a post-doc but hasn't been able to move into a tenure track position because he struggles to get along with people. I know another woman with ASD who lost her job when she slugged a coworker; she was a pastor with a Master's degree. I know another young man who is my son's age; he's much brighter than DS and yet he's headed to a group home because he is unable to manage the most basic ADLs consistently. But it's not all grim, I have a family member by marriage who was initially dxd with PDD-Nos because she has a borderline IQ- and yet she's been married and divorced, is able to work part time in a public-facing position and has her own apartment. Family steps in to manage her finances and drive her to appointments but otherwise she's living very independently. 

Speaking of my own DS, he's a bit like a duck on the pond. Other folks don't always get how furiously he's paddling below the surface. 

[macchiatto]

Thank you for sharing the background and insight. I think the duck on the pond analogy is a good one, too.