Autism Parent Meeting – Tragedy, Mourning, and Divorce

I’m finally pulling my thoughts together a bit more regarding the Autism Parent Meeting I attended a while back.

CW: Ableism, autism parents (usually non-Autistic parents of Autistic children who tend towards wanting to “fix” their children), tragedy rhetoric, temporary abandonment, and verbal abuse.

The narrative, over all, was one of tragedy and upset. Many parents agreed that it was difficult to “see the light at the end of the tunnel” after their child’s diagnosis. One referred to the “year of hell” after diagnosis.

There were some reminders here and there that the child is the same both before and after diagnosis, that diagnosis is a tool for better understanding and services, etc; but those were in the minority. Far more people talked about how they were in mourning post-diagnosis and couldn’t accept the fact that their children were Autistic.

Jim Sinclair wrote an article called “Don’t Mourn for Us.” It is excellent and I highly recommend that parents read the entire thing. Here’s a paragraph to start with:

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize. But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

Autistic traits and behaviors were widely discussed as being “bad” and as “getting worse” as though they’re wholly negative and not differences in experiencing the world or communication attempts relating to joy or distress or anything else.

The parents talked about some non-ABA-type programs and therapies such as swimming, horseback riding, and similar things that didn’t sound too bad on the surface. However, often there would be a casual phrase tossed in about how a child who stopped working on a skill once he was satisfied with his progress was “just being lazy” or that some of the instructors yell so viciously at the disabled children in the program that the parents have felt the need to leave the area completely in order to allow it to continue.

But why would one even allow that sort of thing to be done to one’s child? Let alone abandon them to the verbal abuse? I can only assume it has more to do with the ridiculous expectations society so often places on parents and children.

Then the leader of the group brought out the tired (and debunked) trope about Autistic children allegedly leading to a higher divorce rate. As though it’s any children’s faults when their parents divorce.

Yes, something unexpected and difficult (such as having any children, losing a job, becoming ill, etc) can place irreparable stress on an already unhealthy relationship, but it can also bring people together in a common cause and goals in a healthy relationship. If parents struggle in their relationship after having an Autistic child then they really need to look at their relationship separately from that instead of blaming “the autism.”

It is never a child’s fault when parents divorce. To suggest otherwise is unacceptable and untrue. A divorce is something that adults decide to do. It is often not a bad thing in and of itself either. Usually the relationship has already deteriorated to the point of no return by the time divorce is seriously mentioned or discussed.

These tragedy-fueled and blaming attitudes towards Autistic children are so far removed from what I experience as an Autistic parent that I struggle to understand where these “autism parents” are coming from. I dearly love and support my Autistic children in being themselves and I will do everything I can to support them in their lives. I also want my children to succeed with their Autistic essence fully intact!

I do understand that “autism parents” love and try to support their children and want them to succeed. I just don’t understand how they fail to see that they’re often destroying their children in the process. I fear that they don’t want to see it, no matter how many of us speak out about these issues.

Burnouts, meltdowns, and shutdowns are the results of sustained “passing,” even when done successfully, because of the sheer amount of energy it takes to maintain even a minimally acceptable allistic facade.

And without an understanding of that fact and a rejection of the “tragedy” narrative, Autistic children cannot be helped to become the best Autistic adults they can be. Instead they will grow up in much the same way many of us have so far – feeling defective and struggling to accept ourselves as we continue to fail in exhausting attempts to appear “normal” and accommodate the allistic society in which we have to somehow survive.