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Rory

Last October I attended the largest symposium on Autism in the English-speaking world, sponsored by Toronto’s Geneva Centre for Autism. 6 hours a day for two days of solid seminars, so packed with expert and first person information it truly blew my mind. I was there as a parent of a child on the spectrum: Finn, who has Asperger’s syndrome. And to be sure there were moments when I thought very much of him: how a certain thing would help, how a speaker with autism sounded so like him. But what stunned me was that at the end of the two days, the person I’d thought of most, the son who continually came to mind as I was listening to the challenges faced by people with autism, the characteristics of children on the spectrum, was not Finn; it was Rory.

That wasn’t really a huge newsflash – the idea of Rory possibly being on the spectrum had been playing around in my mind since we had his Tourette’s diagnosis last June. In short, yep, he definitely has TS, but that hardly begins to explain the vast majority of Rory’s obvious challenges with getting through an average day. By the way, Tourette’s and autism are frequent bedfellows. No to mention that children who have even one sibling with autism have a significantly higher risk of having autism themselves.

What I started to realize was that the five or six people who interact with Rory the most, and most successfully, had been successful by approaching him as if he were autistic. It is a spectrum, remember; and each and every child with autism has it differently, and will present with sometimes vastly different (even contradictory) strengths and challenges. With Rory, all the people close to him already understood something about how to relate to a child on the spectrum, and more or less without consciously deciding to, began a long while ago to relate to Rory that way.

It’s as if we began “intervention” before diagnosis.

We did so, I think, because we could. We knew something about how to – Rob and I have had to learn an awful lot about autism and all that goes with it, through Finn as well as in our efforts to learn all we can to help Liam and Rory too. All parents of kids with neuro-developmental disorders do; it’s like a crash PhD course for all the marks in the world. And Rory is our third interesting kid. I think when we saw his particular developmental sensitivities, challenges and struggles, we just immediately started applying all the understanding and coping techniques we knew. Rob, me, my mother, Rory’s two special needs assistants at school (who both have extensive experience dealing with children with autism), his teacher for the last two years, his occupational therapist (at a clinic largely for children on the spectrum) – we all had some insight, we’d seen some of this before, and we just used what we knew. Managing Rory as if he had an autism diagnosis became more or less automatic.

But I don’t know that we ever really thought about an actual diagnosis. I guess it was a process, like it was with the other two boys. Understanding comes both in smooth, gradual waves, and in flash floods; there are times when something slowly dawns on you, and times when you seem to be smacked upside the head with a sudden clarity of understanding.

The autism conference was a bit of a smack. I realized that even I had been carrying around a fairly narrow definition of what it meant to be autistic, and that because Rory didn’t look exactly like Finn, or like one of the other children I’ve known with the disorder, my mind didn’t jump to that word as a label. The funny thing was that for months before that, I had had dozens of conversations, with myself as well as with other people in Rory’s life, about how he presented so much like someone on the spectrum. He functioned so often like a child with autism. So many of the same practices and interventions seemed to help him in the same way they helped kids on the spectrum. I was basically saying, Look. Think of it like he’s autistic, and things make a whole lot more sense.

Um….If it walks like a duck, and quacks like a duck…

Smack.

Meanwhile, even with this circle of educated and able people around him, Rory has continued to struggle. School can sometimes be just tolerable, and other times downright traumatic. Clothing, transitions, outings, social events, even playtime at school can be overwhelming and profoundly distressing. The list of difficulties goes on, and in spite of all of our best efforts, we reached a point when we realized that we just didn’t know enough, and couldn’t help Rory on our own. It’s funny; by the time parents reach this realization, I think, it always feels desperate. Finding someone who can look at your suffering child as say, “Yes, I get it, I’ve seen this before and I can help” feels so urgent it’s almost all-consuming. It’s as if you can’t go one more day watching your child struggle so fiercely.

But before help, we needed an actual diagnosis; of autism, or something else.

So early in November, I started the phone calls. I started at my GP, and asked for a referral to anyone and anywhere that did developmental assessments on children with an eye to autism spectrum disorders. I provided the names of all the organizations we’ve been associated with for the boys over the years, and was open to any additional names my doctor could come up with. I spoke to the school psychologist, our TS doctor, a psychologist friend; asking for any and all leads. I called every clinic, children’s facility, autism association, treatment centre and clinician I could track down, asking for an assessment as soon as possible.

Two weeks later, I had a phone call from the office of a developmental pediatrician, recommended by my GP. He would accept the referral, and we could have an appointment in April. This was November, remember. April, I thought, well, if that’s as soon as we can get it, ok. Oh – said the receptionist, that date is for a consultation only. If the doctor agrees that an assessment is warranted, an appointment will be made for April 2012. When my kid would have had to struggle through TWO MORE GRADES. It’s a quarter of his life from now.

No. Bloody. Way.

Of course, if we had $3000 to spend, we could get an assessment next week.

Back to the drawing board. The next week, three new leads, all at hospitals, including the foremost pediatric special needs centre in the province. And within three days, all came back rejecting our referral. “Rejected?” I asked the secretary at my GP’s office? “I can’t believe I’m saying this to you,” she said, “But all three only do assessments on children up to age 6, and since by the time they could get him in Rory will be 7, they won’t take him.” She sounded as stunned as I was.

So basically, he’s TOO OLD TO BE DIAGNOSED? What?

Right now, there are more people with autism than those with cancer, AIDS and diabetes combined. I more or less work full time advocating for my boys, all of whom have at least one diagnosed neuro-developmental issue. I live in the biggest city in a highly developed country, I speak English, I am not stupid, and I am shameless and pretty vocal when it comes to reaching out for help for my kids. And this is not the first time I’ve been down this road, so you would think that it might be a little smoother by now, wouldn’t you? But it took about 50 phone calls, to every agency in the city, to every developmental pediatrician, to three medical clinics at which we are already patients, to our school psychologist and to every friend in the business I’ve got.

Finally, and yes, much earlier than I’d expected, we got an appointment for an assessment. It’s with a pediatrician we know nothing about, but she does developmental assessments, and we’re taking it. And it’s two weeks from now, which is so unheard of I actually had to call back and confirm it was for real. We were lucky. We did get responses from a couple of other doctors and agencies, but all had waiting lists of on average 6 months. And 6 months, for any child, let alone one in often profound distress, is far too long. The assessment takes about 90 minutes, and uses no specialized expensive equipment: no MRI, no CT scanner. Just a knowledgeable person talking to us and our child.

And as grateful as I am for this ridiculously swift response from this doctor, I know it’s a fluke. So what in God’s name do parents who aren’t us do? And how can we as a society be ok with this? If Rory had a cough, or a broken arm, or say had gained or lost an abnormal amount of weight in a short time, he’d be fast-tracked through to see someone who could help. Why are we leaving so many children, and so very many families out in the cold? The best minds in the community estimate that one in 110 children has a form of autism; one in 90 boys. And we know empirically that early identification and intervention can make a world of difference to the quality of life of these people as children, and into adulthood. But as far as our medical community is concerned, they’re on their own.

6 comments to Rory

  • Frank Daley

    This should be all over the media. Fast.
    I’d say “Keep the Faith” but it’s hard to do when you keep being let down.

  • Sioux

    Beautifully written Regan. I think of you often.
    Love Susan

  • Toni

    Thanks for sharing your experiences and thoughts.. You have such a heart to fight for your boys to give them the best they all deserve :) I understand just how much that takes..and you have it times 3? (I just found your blog not too long ago, and am still reading through your posts and learning about your family.) Keep up your sense of humor, their teen years will sneak up on your before you know it :) At least they are all boys! Girls = drama + “Pms”ing. LOL

  • Nancy

    Regan and Rob and Liam,Finn and Rory:

    This is absolutely the most ridiculous state of affairs I have heard about re any form of neuro-developmental disorders.
    How can we get these children who are in desperate need,not to mention their parents.

    We are family and we would be happy to subsidise some of these costs and advocate in any way we can. Let us know. There’s got to be a way.
    God Bless You for loving your boys so much.

  • Jim Streeter

    Regan: you and Rob are so strong, courageous, loving, bright and, yes, shameless! Good for you! Jim Streeter

  • Evan

    Hi Regan,

    My wife and I have watched this painful, never-ending diagnostic process with our grandson, Sebastian. The pain is not totally surprising, as the factors involved in ASD are VERY complex and, in Sebastian’s case, include an intra-cranial pressure more than double the normal maximum, which was discovered accidentally by a spinal tap taken after his behavior and language suddenly improved briefly following multiple simultaneous bee stings… So getting a complete diagnosis is a real challenge possibly involving many, many disciplines, and perhaps may never end. Then there’s the challenge of getting any follow-through and remediation help, especially given an ever-incomplete diagnosis and a relative lack of public support and services.

    Your contribution in writing about these aspects of ASD is invaluable. Please keep at it – painful though it may be – because it is desperately needed and the challenges are sadly not going to go away anytime soon in the current economic and political environment.

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