Sunday, April 27, 2008

On Caring For Autistic Children

I chanced upon this article about a father's experience taking care of his autistic son.

I can relate in so many ways. My oldest daughter, aged 6, has PDD-NOS-- not full-blown autism, but many of its symptoms. She's verbal, although she can't always say what's on her mind. She can learn, and is capable of going to school with a modified curriculum.

At least with my daughter, when she displays inappropriate behaviour, there's hope that her behaviour can be modified.

I also suspect her three-year-old sister is autistic (evaluation to come) and if that's the case, there's a 90% chance that my unborn child is autistic as well. Daughter #2 is far more advanced than her sister, though. She might just have Asperger's, which is the mildest form of autism.

"David's a gorgeous looker," I told interviewers. "We're hoping he'll meet a Californian heiress who just wants him for arm candy and doesn't care about his conversation."

I post on a message board for parents of autistic children. Many of us post pictures of our children. We noticed: our children are really good-looking.

I happen to think mine are pretty good-looking, too, and people have spontaneously told me so.

I think autistic children are better-looking than average. I don't know what it is about these kids, but they look really fresh. Sure, I've seen a few kids I would consider not that good-looking, but they're in the minority.

On Easter Monday in 2005, 67-year-old Wendolyn Markcrow drugged her son with sleeping tablets and killed him with a supermarket plastic bag. It was more than nine years since she had first written to her GP, warning that during his temper tantrums she frequently threatened to kill Patrick. Her son, 36 when he died, was autistic and had Down's syndrome. Mrs Markcrow, who also admitted manslaughter, pleading diminished responsibility, was given a two-year suspended sentence. The judge, Mr Justice Gross, called this the "merciful course".

And people wonder why pro-lifers are against euthanasia...

We needed experienced carers, and the only people we could ask were social services.

Again, I can relate. In Ontairo, it's not necessarily "social services", as the waiting lists are just ridiculous. Nevertheless, when you do ask for help, you don't know who you're going to get. It can be intimidating. I've been very lucky. I've always had the best people surrounding me. When someone recommended a psychologist or some other professional, that's who I called on. Even now, when I don't have a recommended person, I find it very difficult to get started on some form of treatment. For instance, my daughter needed some kind of physiotherapy for gross motor skills. You need someone who can deal with autism. Who do you call? It just seems a bit weird to phone around. Physiotherapy is often for things like work-related injuries, sports injuries, car accidents, surgery and falls. So you phone around. You don't know who you're talking to. You have to ask questions. It can be a little bit time-consuming. You want the help as soon as possible. You don't know what's realistic.

Another example: I have to find some kind of social skills intervention. For that, I need a personal support worker. What a pain in the butt to have to hire your own worker. You have to review the CV, you have to interview them, you have to check their backgrounds.

Are public services any better? At least with the public sector, you know the people are already screened.

I know what some people are thinking: fund more services. I don't know if that's automatically the answer. As it stands, a lot of private professionals aren't taking new clients. What that tells me is that even among people willing to pay, there's a shortage. What we need are more professionals-- speech therapists, occupational therapists, psychologists, etc.

"My son's problems aren't the worst of it," one mother told me. She has two grown-up children and a small boy with Down's syndrome and autism. "It's the endless stream of council people and health service people and education people, coming through my kitchen, drinking my tea, asking nosy questions about my health and my marriage. That's what I can't stand."

I can really relate.

When you have all these professionals in your life, they invade your privacy. I don't mean that they do it on purpose, or that they're being nosy, etc. It's important that they know about you and your family so that they can treat the child, but sometimes it's a pain to have to answer questions about what's going on in your family.

The strong can't stay strong for ever. Nicola and I are lucky to have each other to lean on, and very lucky to have our two affectionate, fun-loving children, but we can't bear this weight alone for ever. And we daren't risk adding to our burden by asking for help.

I really relate. Asking for help can be a burden. I find that's probably one of the hardest things about taking care of a child with autism. You know the child needs help, but you know that helps comes at a price. Every time you need something, it's another round of phone calls, appointments, re-presentation of your daughter's case, organizing the babysitter, etc, etc, etc,

At least if daughter #2 is autistic, I'll know who to phone.

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