You've probably heard it before. Autism is a complete burden. It wears down patience of caregivers, tears apart families, and robs people of their lives. There are plenty of blogs around the internet to this effect. If you've been reading about autism, you've probably come across a few of them.
I have two initial reactions to these. First is that autism should not be seen as the enemy. It is not a separate entity, robbing you of your life and your child of his/her humanity. One of the things I devote my life to is the idea that autism is an integral part of an autistic person's identity. Accepting a person means accepting that person's autism as well.
My other response is to say that parenting in general is a stressful job. It's hard to find a parent that isn't tired, especially these days, when it's almost impossible to support a household on a single full time job. Why should families with autistic children be seen any differently?
Well, I have to acknowledge that I'm wrong on this second point. Parenting is certainly stressful. However, developmental disabilities, including autism, present a set of challenges that most parents have no way to prepare for. Most parents of autistic children can't even benefit as much from the experience of their own parents.
The best answer I can think of is to create a network of support programs that are easy to access, well funded, well administered, and that are administered in part by people with the developmental disabilities they are meant to help. After all, we have daycare centers and classes for new parents. For low-income families, we have programs like WIC. It's obvious that we as a society place value on raising children. Why should families with developmentally disabled offspring be on their own?
Parent support groups do exist, and can be very valuable. Many of them also provide childcare for the duration of the meeting. It can be refreshing to know that there are others with the same challenges that you have. One further point about support groups is that I find the best kind of support is the kind that makes you feel good about yourself, despite the problems or challenges you might have. Feel free to try to change the tone of your support group if you do not feel this is the kind of support you're getting.
Unfortunately, support groups for parents of adults seem to be in short supply. There are adults who need full time care and/or supervision. That can be draining, and their parents could really benefit from supporting each other.
One thing that a lot of stressed out parents say is that they don't know what to do. That something like autism doesn't come with a manual. I find myself wondering if classes might help. Again, classes for new parents exist. Why can't we have classes for parents of developmentally disabled children? Of course, each child is different, and some things can only be learned as you go. At the same time, we assign labels because there are certain traits that are common to those who share a common label. It may make the learning process smoother if there is some help in guiding it.
The biggest unfulfilled need that I can see is for respite. In case you don't know, respite is a few hours' relief for the primary care provider. This can take several forms, depending on the needs of the individual. For some, it could be a traditional babysitter or childcare center. A respite provider with knowledge of a person's routines and specific behavioral quirks may be necessary in some cases. As you can imagine, this isn't so hard to find.
The shortage is primarily for people that need full, 24 hour supervision, especially adults. This requires certain kinds of training for things like preventing dangerous or self-harming behaviors. It involves dealing with violent or aggressive actions, while calming the person down. Other kinds of care are required that most people have no experience with. The real problem with providing this kind of respite is that there is a shortage of people that are willing to do it. I was recently talking with some friends of mine about how this problem could be solved. Unfortunately, we were not able to come up with any good answers. If you want to leave any thoughts in the comments section, that would be welcome.
To recap, many of the necessary programs do exist. However, many of them are also underfunded and understaffed. Some programs are offered for free, but others can be prohibitively expensive. These are problems that often prevent families from getting support, or programs being able to adequately provide it.
Many programs are also administered by people who know very little about the developmental disabilities they intend to serve. This is why I feel that developmentally disabled people should play a role in the administration of these programs. We are making progress on that front, however. At least with autism, it's becoming more widely accepted that autistic people are knowledgeable enough to serve autistic people.
There is even movement on this front in government. Ari Ne'eman, a well-known autistic self-advocate, was appointed in 2010 to the National Council on Disability. There is a movement now by the Autistic Self-Advocacy Network (ASAN) to require all autism-related committees to be at least half staffed with autistic people.
In summary, while I may not have started out agreeing about the seriousness of problems raising autistic children, there are some very real problems that need to be solved. Instead of blaming autism, let's work together to push for positive change.