autism acceptance – Real Social Skills

In the special needs service provision community, there is a strongly held narrative about what happens when a kid turns out to be disabled. This narrative causes a lot of problems.

According to this narrative:

Professionals believe that parents have a strong emotional attachment to the typically developing kid they were expecting.
They are usually in denial even about obvious signs of disability, and will hold on to their fantasy for as long as possible.
At some point, the parents are forced to confront their child’s disability.
They lose their fantasy of the child they expected, and this is emotionally devastating.
In order to move on, they have to mourn the loss of the child they expected and the life they expected.
Parents need emotional validation and help working through that.
All of this is very widely believed, and I think this model causes a lot of problems.

I think the grief model is a problem on several levels:

When parents are grieving for the child they expected, it’s really hard on the child they already have:

Children want adults in their lives to see them, approve of them, and love them.
When parents are seeing ghosts, they’re not seeing their real child.
Children can tell when adults in their lives are looking past them. It hurts.
When parents are mourning for the child they expected, they are disappointed by the child they actually have.
Children can tell when adults in their lives are profoundly disappointed in them. It hurts.
And it especially hurts when the child has no control over the things that are disappointing their parents.
While parents struggle to accept their children as they are, their children struggle to cope with being parented by people who do not yet find them acceptable.
That hurts. And it leaves scars.

Kids need support in navigating this, and they don’t often get it:

There is often a tendency to pretend that kids don’t know.
But disabled kids aren’t a separate species. They’re kids, and kids are almost always very sensitive to how adults in their lives feel about them.
Kids need people in their lives who see them, and not ghosts.
Kids need people in their lives who can accept and value them as they are.
Sometimes that can’t be their parents. Or can’t (yet) be their parents.
But it needs to be someone. (And their parents need to understand that their attitude towards their child affects their child)
If you work with kids in any capacity, it is likely that this person needs to be you sometimes.
Looking at the real child and seeing a person matters. Seeing them and not a ghost of someone you expected matters. Making it clear that you’re not disappointed in them matters.
If you can do that for kids you work with, it can prevent a lot of pain. (And can likely help their parents to come to a point of acceptance sooner.)

Further, not all parents actually feel this way:

The professional narrative about grief and mourning does not accurately describe all parents.
Parents of disabled kids have all kinds of feelings about their kids for all kinds of reasons.
Not all of these feelings are negative.
Even when parents have negative feelings, they’re not always grief.
Sometimes parents feel overwhelmed and confused about how to support their child.
(Or worried about how to afford the things their child needs).
(Or repulsed by things professionals are telling them to do to their children as therapy.)
Sometimes parents feel ashamed about not having noticed sooner.
Sometimes parents feel concerned that they may have caused their child’s disability.
Or any number of things.
Not all parent feelings are grief, and the full reality needs to be acknowledged

Parents are sometimes pressured into mourning when they weren’t already grieving:

The grief and mourning narrative is strong and pervasive.
Parents are often expected to describe everything they’re feeling as grief.
Parents are often not given any support in working through the other feelings and doubts they are having.
This can result in parents being pushed into a mourning process that wasn’t actually necessary for them.
It is very damaging to both parents and children when this happens.
It is not good to grieve for the living. When it’s avoidable, it should be avoided.
It’s important to be careful to avoid pushing parents into adopting a grief narrative unnecessarily.
(Sometimes it’s not avoidable, for reasons that aren’t anyone’s fault. But it’s often more avoidable than people realize.)

Short version: There is a pervasive professional narrative that says parents of disabled kids need to mourn for the child they were expecting before they can accept their real child. This isn’t always true, and parents are sometimes pressured into feeling and mourning through grief that they otherwise would not have experienced. When parents *do* mourn for their living children, that is emotionally devastating for the kids. Parents and kids both need much better support in navigating the disability acceptance process.

For another perspective on this, see Jim Sinclair’s classic article “Don’t Mourn For Us” (written about autism specifically.

A reader asked:

I get where you’re coming from saying all autistic people are disabled, but I’m autistic and don’t consider myself disabled, because I move through the world with no external accommodations. I feel uncomfortable claiming the word disabled and I feel more uncomfortable when people apply it to me without my consent.

realsocialskills said:

Here’s what I mean by saying all autistic people are disabled:

Autistic people, *all* autistic people, have things that they can’t do that almost all neurotypical people can do.

That’s a significant fact. And it doesn’t go away because you’ve arranged your life in a way that works for you. And losing site of that can cause a lot of problems.

To use a personal example:

I have a terrible sense of direction. I absolutely need my iPhone to be able to go anywhere new by myself without allowing an extra hour to get lost. That’s true no matter how simple the route is.

I have, at many points, forgotten that I am disabled in this particular way. In my day-to-day life, I normally stay within a small range of a few very familiar city blocks. So I don’t experience my disability, I don’t notice I am disabled. I even, sometimes, forget that I am impaired in that way. I used to get myself into a lot of trouble assuming that I’d gotten over it.

Similar things happen with executive functioning. I need a lot of cognitive cues to be in place to be able to do things. If they’re there, then I can forget that I have problems doing stuff. Which can cause serious problems if what I need to do shifts and my existing cues don’t work anymore.

Understanding that I haven’t gotten over disability and I’m not going to get over it helps me to function better. Because whether I notice my disability or not, it’s always there. When I remember and acknowledge that I am disabled it, I can plan to accommodate my disability.

I think this is true of all autistic people, whether or not they identify as disabled.