Autism by Any Other Name…
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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Today’s post is by Jeff Stimpson, a fellow autism blogger who appreciates the humor on our journey.
Rippin’
Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/
Close Enough to Care
They say small children unleash their anxieties and frustrations on those closest to them. A two-year-old could be a dream child all morning at daycare, then come home and spend the next hour screaming bloody murder at mama. A four-year-old can play all afternoon in preschool, never losing his smile, then tantrum to shake the walls for daddy on the way home. An autistic almost-six-year-old can work all day in school, barely taking a break to play (his choice), and tear down the very foundations upon his arrival at three o’clock.
I am used to this. All of my children have done it, and I remind myself it is because they feel safe and secure with me, enough to put down the “happy kid” facade. Jack, especially, has it down to a science. Even as a baby, when we would keep him out until all hours (because he didn’t sleep until three or four am), he would smile and laugh and have a wonderful time wherever we were. That is, until we crossed the threshold into our home. The door would close, and Happy Jack disappeared, replaced by Screamy Jack. Screamy Jack raged for hours, pretty much in symmetric relation to how long we’d been out. If we went on vacation, he hung around for a week after we returned.
Screamy Jack only likes to be around immediate family, though. Screamy Jack needs the love and support and freedom to vent his frustrations, and only Mama or Daddy will do for that. Actually, it’s usually only Mama who gets the pleasure of his company. Jack has never “acted out” with anyone but myself, my husband, or one of his therapists/aides. Until today.
We have never had “family friends” who lived nearby. My husband and I have friends, some of them have children, and none of them have ever been within walking distance, mainly because we previously lived in a very non-kid-friendly area of a not-too-kid-friendly city. We now live in a neighborhood and region teeming with children, and we were bound to meet some of them, and their parents, eventually. We met Team Hartman (we’re Team Baskin) at the playground near our house. They have three boys very close in age to ours, and we clicked with the mama and daddy. A family match made in heaven.
We have had playdates with Team Hartman, birthday parties, BBQ’s, and all of the things you’d expect from neighbors who are also friends. Our kids are even in school together now that Jack has officially transferred. I know it’s what folks do every day, everywhere, but it’s new to us, and we’re enjoying it.
My husband has a new job with daytime hours, so Mama Hartman has, on occasion, brought Jack home from school with her son. For some reason Jack calls her his “daycare lady,” even though her care really only entails meeting him outside of class, a few minutes of playtime at the school playground, spirited conversation between Jack and her seven-year-old on the way home, and depositing him on our doorstep.
Today, Mama Hartman decided to stop off at our neighborhood playground for a bit on the way home. Jack is always exhausted after school and I rarely take him to play in the afternoons because of that, but I figured since he was already out and about it couldn’t hurt. A lot of lessons were learned today.
Jack loves Mama H, and I know the feeling is mutual. That is the only explanation I have for why, after some good playtime, Jack lost it. He fell apart. He crumbled completely and laid himself bare. She was at the playground by herself with her own three children, the youngest, at two, has his own evil alter ego shown mainly to her. And she had Jack, or should I say, Screamy Jack. He did not want to leave the playground. He did not want to stop throwing things. He did not want her to take an alternate route home (the park is 3 blocks from us). He threatened, he bargained, he screamed, he raged, he cried.
He trusted her enough to let himself go.
Several things went through my mind when she showed up on my doorstep with him, frazzled a bit but still smiling. First, it dawned on me that there have been only a handful of occasions in Jack’s six years that we have let him out of our sight with someone other than a teacher or therapist. Secondly, I wondered if this woman, who I consider a friend, would ever dare take him anywhere but straight home ever again. And third, I realized that there must be a pretty strong level of trust and love there for him to let his guard down and be vulnerable like that with her.
Mama H has spent enough time around Jack to know when he’s in distress, even if she’s not had to deal with it directly. Thankfully, they were close enough to home that I could have come for him if necessary. I didn’t need to. She got him into the car, endured his abuse on the way home, and delivered him safely. I know our friendship may have been tested this afternoon, but I also know I now trust her more than ever.
Once home, Jack apologized for his behaviour and gave her a hug. When pressed as to why he melted down, he said he was “afraid there would be trouble, but there wasn’t.” For some reason he felt fear – maybe he thought she’d tell me he’d acted out and he would be in trouble, maybe he didn’t recognize our neighborhood from a different street and thought he’d be lost. Whatever it was vanished on our doorstep.
Mama H has expressed an interest in learning about autism, and I’m guessing she got a crash course today. I know that as Jack gets older more people will come into his life, and more people will gain his trust. I can only hope they all treat him with the same respect and love.
Good Vibe University
Last month I had the joy and honour of joining Good Vibe University‘s “Follow Your Feel Good” conversation about the Gifts of Autism. I chatted with some wonderful women about how autism has changed us, enlightened us, and brought us gifts we’d never imagined in our pre-autism lives.
I invite you to take a listen.
If
If my child didn’t have autism, my world would be different.
My children would have furniture in their bedroom and decorations on their walls instead of mattresses on the floor.
My son would nap when he’s tired instead of pacing and jumping and screaming and encouraging his brother to join in.
We could go out and enjoy the world in the evening instead of having to wrangle exhausted children into bed early.
Mealtimes would be spent enjoying each others company instead of constantly reminding my son to sit in his chair and not lay across it or pace around the kitchen.
We could stay with family when we travel instead of always having to stay in a hotel. And I wouldn’t be quite so afraid to fly with my children.
We could have a lazy day at home without worrying if the children have had enough physical activity to make it through the day without a breakdown.
We could go to the movies or a show or a concert or a parade without worrying about the sound and light levels.
We could get a babysitter without worrying about his/her welfare.
We wouldn’t have to explain why we can’t always have friends over or why we can’t always make playdates or why we can’t be super flexible all the time.
We wouldn’t have to always explain how autism affects our entire family, not just my son.
We wouldn’t have to explain that my younger children do not have autism, even though sometimes they act just like their big brother in stressful or exciting situations.
We wouldn’t have to wonder if our two neurotypical children will eventually learn to model their peers and not their brother’s erratic behaviour.
I wouldn’t feel like I’m a warrior, in constant battle for my child’s life and my own sanity.
If my child didn’t have autism, my world would be different.
I might not have learned to be patient and trust that my child will figure things out.
I might not have appreciated the sheer magic in watching a child acquire language, through any means necessary.
I might not have learned all the valuable tools for learning that I’ve shared with my younger children.
I might not have learned the subtle art of negotiation with a child that allows him to flourish and gain control of his life while still guiding him.
I might have missed the necessity of an afternoon downtime.
I would have never met the community of amazing people it took to lift my child up and put and keep him on his path.
I would never have met the community of amazing people it has taken to lift me up and put and keep me on my path.
I might not have had such a compelling reason to rediscover my joy of writing.
I would never have known about the beauty found in the tiniest details of life around me, as pointed out by my son.
I wouldn’t have the unbelievably amazing child who is my oldest son. My beautiful, beautiful, beautiful boy.
My beautiful boy.
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