developmental disability

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.

You can't appropriate your own mind

i briefly self dxed as autistic, but i met with my psychiatrist yesterday and she told me since i noticed social deficits and tried to compensate, and managed just like an allistic person, it was just social anxiety bc if i were autistic, i wouldnt have noticed or been able to learn so well. she didnt mention the cognitive things i brought up so im guessing they were normal /insignificant. how do apologize on my tumblr for fucking this up and appropriating?
realsocialskills said:
You don’t owe anyone an apology. Anyone in our community who has suggested that sincere but mistaken self-diagnosis is appropriation owes *you* an apology. 
Thinking you’re autistic and being wrong is not appropriation. We all make guesses about ourselves; some turn out to be right and some turn out to be wrong. Thinking you’re autistic and being wrong is not appropriative and it is not fucking up.
That said, from what you described, it’s not even clear to me that you are wrong about being autistic. I’m not a diagnostician and I don’t know you, so I can’t say one way or another. But it sounds to me that your psychiatrist is basing their response to you on stereotypes rather than professional knowledge of autism.
Not all psychiatrists are competent to evaluate autism, particularly in adults. Psychiatrists are primarily trained in mental health; autism is a developmental disability. Mental health training does not imply expertise in developmental disability. It’s entirely possible that your psychiatrist is disregarding your cognitive issues not because they are normal, but because your cognitive issues are outside their area of professional competence. 

Most autistic people notice social deficits and try to compensate. Most autistic people generate effecting coping strategies for a lot of things, including social situations. All autistic people can do some things that neurotypical people can do. Being able to notice and compensate for problems does not mean you’re neurotypical.
It’s fairly common for people who think they’re autistic to be told by mental health professionals that if they’re self-aware enough to ask, they can’t possibly be autistic. Or that if they can do anything at all, it must mean they’re not autistic. Those are perceptions based on stereotypes, not accurate understandings of autism. People with advanced mental health training are just as prone to a stereotypical view of developmental disability as anyone else.
If your doctor is responding to your concerns in a way that might be based on stereotypes and misinformation, it’s probably a good idea to find someone else (perhaps a neuropsychologist) who has a better understanding of autism and is familiar with adult diagnosis. 
You may or may not be autistic, but it sounds like you could benefit from investigating further. And ultimately, the opinion that matters most is your own. You know your own mind better than anyone else does. 
And whatever conclusion you or any professional ends up reaching, you have done nothing wrong or appropriative. It’s ok, and important, to try to understand yourself and figure out what you need to make your life work.