autism acceptance

Webinar tomorrow “Using Jewish Culture to Understand Autism and Inclusion”

I hate Autism Awareness, but I love how autistic Jewish culture is. So I’m doing a webinar about that on Monday, April 3rd from 1-2pm Eastern time. (Wearing my rabbinic hat).

CART captions will be available. Webinar will be recorded. You can register here.

You can see recordings, slides, and transcripts from past webinars here.

When professionals assume that parents of disabled kids see ghosts

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.)

Tl;dr 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.

Light It Up Blue is an annual reminder that Autism Speaks can't make us go away

Today is Autism Acceptance Day, and April is Autism Acceptance month. It’s also an annual reminder that we are strong, we are still here, and that attempts to eliminate us are failing. When they light it up blue, they’re admitting that they’re weak and they’re failing.

Autism Speaks and others who wish that autistic people didn’t exist think that it’s Autism Awareness Day. They’re calling us a public health crisis, and they’re trying to get others to agree with them and give them money. They want to get rid of us. They try to pretend they have any chance of succeeding.

I realized today that April 2nd is actually an annual reminder that, no matter how hard they try, they can’t actually get rid of us. When Autism Speaks supporters are turning on blue lights, what they’re really saying is that they have just spent another year wasting a lot of money in a completely futile attempt to get rid of us. They are acknowledging with those blue lights that we are still here, and that we’re not going anywhere.

We are more powerful than they want us to believe. We have persisted in existing despite their pervasive attempt to eliminate us. We are succeeding in spreading love and supporting one another in power and pride.

We are speaking up. We are being heard. People who care about autism, autistic people, education, and communication are listening. The tide is turning.

Their hate symbols are a sign that, even though we have far less money and far fewer resources, we are more powerful than their ineffectual attempts to make us go away. We are right, and we are strong, and we will be here long after Autism Speaks is gone. We ought to keep that in mind when we see the pathetic hate symbols they’re displaying today.

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.

An anti-skill that interferes with friendship

This post is a further response to an ask by someone who identifies as aspie and is struggling to making friends.

Yesterday, I addressed the burden of stigma we face, and how it can make it hard to find people who will treat us well enough to be good friends. Today, I want to start talking about other problems autistic people often have making friends. (Usual standard caveat - if you relate to any of this, it’s fine to use these concepts whether or not you are autistic. Don’t worry about appropriation.)

There are a lot of social problems that autistic people often have beyond other people’s anti-autistic hate. Some of these things are inherently difficult for some of us, and some of them have to do with how we are often taught counterproductive coping strategies.

For instance, a lot of autistic people find it difficult to judge other people’s boundaries and level of interest in interacting (and that’s partly because, as kids, we’re taught that we have to interact with other kids and see them as friends regardless of what we or they want).

Here’s an example of how an autistic impairment and stigma combine to create a relationship problem for some people:

  • One thing that often gets autistic people classified as aspie is having more receptive language problems than expressive language problems
  • People with really good, or good-seeming, expressive language can often cover for the fact that they don’t understand much of what’s going on
  • This allows them, especially as kids, to pass as just socially awkward, or to pass as being too gifted to get along with other kids, or any number of variants on that theme
  • There is often very, very intense pressure on autistic people classified as aspie to cover impairment at all costs and to appear as normal as possible
  • This makes receptive language problems even worse, because it prevents them from getting good feedback on whether they’re understanding anything
  • And sometimes, aspie spaces can make this even worse. Sometimes aspie-oriented communities are centered around helping people to deny that they have language problems, and to say that the rest of the world just communicates wrong
  • (It’s true that the rest of the world needs to work on accommodating people with communication disabilities more - but autistic folks need to acknowledge that they *have* communication disabilities, and a lot of aspie-identified folks like to deny this)
  • Covering up receptive language problems can make friendship really difficult. Friends need to be able to understand each other
  • Which means friends need to be able to admit it and fix it when they *don’t* understand each other

If this sounds like you, it’s likely that getting better at friendship will involve looking more autistic.

More on social problems autistic people often struggle with tomorrow.