What’s in a label? I mean, really? I know the whole “a rose by any other name…” spiel, but I also know that sometimes labels are there for a reason. Sometimes the label helps you to understand what’s inside the package a little better.
It’s been four and a half years since we first had Jack assessed by Early Intervention in Los Angeles and we took the first steps on this journey of a lifetime together. It’s been three and a half years since he was formally diagnosed with autism spectrum disorder, autism or ASD for short.
At the time, I had mixed feelings about my child being “labeled”. I knew that with a formal diagnosis of autism the doors of opportunity would magically open for Jack, and he would be supported both at school and socially, at least through early adulthood. I also knew that for some people in his life, a label served to “explain” Jack a little bit, and made it easier to understand him.
On the flip side, labeling a child for life can be a harsh thing. Jack will forever carry a stamp on his forehead, or so I thought at the time, that will cause people to judge my child before he has a chance to show his true self. This reality shattered me and broke me to my very core. No parent wants their child to suffer, especially for something he can’t change.
I had no idea how we, he, would reconcile these two very different aspects of the one little word, autism.
What I, we, discovered, is a whole new world just waiting for us with open arms. People who helped us see the beauty in the chaos, the light in the sometimes profound darkness. Therapists, teachers, professionals, parent, people who have been walking the same path for a while, and those who have just begun. People who understood the strangeness that is our reality now, and don’t think it’s actually that strange. People who cheer things others take for granted. People who laugh with us at the absurdity of it all. We found community.
Launching this site definitely helped me. I started it with the intention of sharing my deliriously funny child with the world, and got so very much more in return. The inkling of an idea I had in the beginning was reinforced in spades: autism is a gift. For Jack, for me, for our family.
So, four and a half years on, we are at peace. Autism is still quite often a daily struggle, but it’s also an integral part of our family. There are so many experiences and people and perspectives we might never have been exposed to had autism never entered our lives. I have said it many times before, and I will say it again now: I will go to the ends of the earth to alleviate the things about autism that are painful, hard and stressful for Jack, but I will not wish for him to be “normal”. Jack is the person he is because of autism, and he is beautiful.
A leap into the future.
We are at peace. Well, we were. Not now.
We moved to Canada a year and a half ago, and we love it here. The children are happy, mama and daddy are happy, the family is happy. It was a good move.
When we got here, Jack was immediately taken in by his new school, and once they assessed his situation, he was given full support. He transferred to the school near our home this year (he had been on the wait list), and they welcomed him with open arms and a full-time SEA (special education assistant). He is in the grade one French Immersion program and doing really well. He’s had no support outside of school, though, because that requires funding from the British Columbia provincial government. In order to get that, Jack needed to be diagnosed again by a Canadian doctor. Not a problem, we thought, the only issue is a possible year-long wait list.
We had no idea the wait would be the least of our problems.
The clinic in our area that does the autism assessments contacted us a couple of weeks ago and I began a conversation with a wonderful caseworker. She requested copies of many of Jack’s reports, IEP’s, etc., so I started scanning and emailing forms. I think I sent well over a hundred pages out of my four-inch-thick “big book of Jack”, which includes every report, letter, IEP and piece of paper concerning autism that I’ve collected since we started all of this back in August of 2007.
In the interim, I was hearing horror stories from other local parents about how their children had been misdiagnosed with ADHD or not diagnosed at all for years. Parents who finally, in desperation, paid thousands of dollars out of pocket to hire private clinics to take a closer look at their child and give a more accurate diagnosis.
I was nervous, but held firm to the belief that we’d be fine. After all, Jack was formally diagnosed by not just one, but two doctors, completely independent of one another. He has had years of occupational therapy and speech therapy, spent three years in collaborative preschools with special education teachers, had a year of in-home ABA therapy, and has always had a full-time support person in school (Behavioral Interventionist in the US, SEA in Canada). He has been supported by the Lanterman Regional Center, Working With Autism (for both BI and ABA support), several independent occupational therapy centers, and the Los Angeles United School District (LAUSD). No less than 22 full-time professionals in the last four years have worked with and for Jack.
Every one of these people have and continue to support Jack (including several in Los Angeles, who I consider to be his “team”, and I consult before any big decisions, like putting him into French Immersion). My husband and I have worked hard. Jack has, and does work hard. It’s an ongoing job, and it’s paying off.
Evidently, too well.
The wonderful woman I was in contact with at the clinic here in BC thought of us when a cancellation came up last week, and we scrambled and made the appointment, mere hours after she called. It was a simple assessment, just another ADOS. Jack didn’t have school that day due to a teachers’ strike, and he was excited to go play games and work puzzles. He was engaged.
The doctor’s verdict shouldn’t have shocked me, but it did. She said he “barely met her parameters” for autism, and she was more inclined toward PDD. My heart sank, tears welled in my eyes.
In California, as with many of the United States, PDD does not count as “real” autism. Close, but no cigar.
All I could think was that all the years of hard work led us to this. There is no cure for autism, but I guess if you’re close enough to “pass”, you can fall off the spectrum and get shut out of the community.
Both the doctor and caseworker were very quick to assure me that in Canada, PDD and ASD are treated the same. They both receive the same funding and the same designation from the government. There was still some discussion as to whether they would push for a speech evaluation and more thorough psych exam, but for the moment at least, I was assuaged.
I slept on it for a few days, and became less so. I realized that I was not, in fact ok with this new diagnosis. I am very far from ok with it. My child has autism, not PDD. I know this. Everyone who knows Jack knows this. How can all of the people who have worked so closely with him for so long be wrong? I thought of all the things I didn’t mention in my part of the interview, all the obstacles he’s overcome, all of the “bad” things we’ve dealt with. I wondered if perhaps I had gotten too cocky and Jack had had too “good” a day. A perfect storm of neurotypicality, if you will.
After a sleepless night hashing it over in my mind, I sent the caseworker an email asking, politely, that they pursue the additional assessments. I explained that I understand their position, but in my mind, autism just doesn’t disappear. I don’t know how much influence I had in the decision, but within a day I got the call that they would, in fact, be going ahead with the evaluations.
I felt some relief, yet a nagging voice in my brain just wouldn’t quit. “I’m not ok,” it said. “I need it to be autism.”
Why? Why am I so afraid of losing autism? Why am I afraid of losing what is essentially just a label? Jack will still be the same person he’s always been, whether his file says “autism” or “PDD” or “purple-winged boogie monster”. He will still be my hilarious, socially-challenged but eternally endearing, beautiful boy. Jack will not change without autism.
Or will he? In my mind, he, we, will lose identity. Community. Future. When Jack was first diagnosed, I took a deep breath and told myself “here we go, this is his/our life now”. I never dreamed that would change. Sure, I expected and hoped for him to adapt and learn and in some ways acclimate, but I never thought for a second the autism would go away. That just doesn’t happen.
And there it was. I need autism now. It’s a part of me. It’s who Jack is, it’s who I am as Jack’s mama, it’s who we are as a family. Autism joined our family the same day Jack did, and it’ll be with us just as long.
And I suppose if the official diagnosis stands at PDD, not much will change. Life as we know it will roll on, and Jack will continue to be hilarious and socially-challenged and endearing. And I will stubbornly cling to the name of this website.
In the end, it’s just another stop on our journey together. Autism really is a trip.
The family that autism built.
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**UPDATE**
I had a few more thoughts on this, so make sure you read the follow-up here.
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