Travelling through the Five Stages of Autism Diagnosis
Adapted from keynote address at Autumn Evening for Autism
You may have heard this before:
If you’ve met one child with autism — you’ve met one child with autism.
I’d take this further, if you’ve met ONE FAMILY living with autism, you’ve met one family living with autism.
Each child is different and so is each family. We have unique circumstances, resources, support and perspective.
But there is something we have in common. Much like with grief, we all go through similar stages after we’ve heard words like
“Your child has autism”.
We may react differently to each of these stages — we may not go through the stages in the same order, and we may not yet have experienced each stage.
Here’s my family’s story of progression through the stages of denial, anger, depression, acceptance and action.
A Downwards Spiral into Denial, Anger and Depression
In second grade, after a meltdown in which my sweet 7-year-old turned over not a single desk, but every single desk in the classroom, and the teacher evacuated the other children around him, the school psychologist was brought in for an assessment. She observed him a couple of times in class and spent about 45 minutes with him.
Less than two months after the meltdown, my husband Derek and I sat at a table with teachers, the principal and the psychologist, and received the news — your son has moderate to severe Aspergers (which incidentally will only be Aspergers for another six months, then it will be called an autism spectrum disorder or ASD).
My husband broke down in tears. The rest of us sat silently.
“What does this mean for us,” we asked?
“It means we‘ll bring in the ASD team and he’ll get a plan for school.”
“And what does this mean for our life,” we asked?
“I’ll send you an email with a list of services”, the psychologist told me.
And so began a series of calls to service providers.
“He’s too old, too young or too high-functioning,” they said — or “He’s on the wait list”.
So we sent him to a social skills group, and did nothing further.
As the routine became familiar and anxiety lessened at school — things stabilized.
He was fine we decided. No services fit appropriately anyway. Maybe the diagnosis was wrong… I kept that niggling thought at the back of my mind.
I was in stage 1 — DENIAL
For us, denial inspired inaction.
And then there were anger and depression — For me, stages 2 and 3 appeared concurrently, with a healthy dose of denial still in the mix.
I couldn’t wait to get the kids off to school so I could drop back into bed. My other responsibilities and interests suffered.
And I started to get angry.
“The report from the psychologist was clearly biased,” I thought. It was administered on Halloween — of course he didn’t want to spend time away from the class games — why hadn’t she mentioned the holiday in the report? And they didn’t use the ADOS — A.D.O.S — the gold standard test — the school was just fulfilling their own needs. What about ours?
And how could they deliver the diagnosis to us like that, in front of a group of virtual strangers , my husband in tears, and then just let us walk out the door with no further support?
Well, I’m not one to stay in a situation that I don’t like; I often say “If you don’t like it, change it!”
So we decided that we would move to Costa Rica.
The why, the how and the where are in themselves the subject of a whole other discussion — I’ve got a website dedicated to that right here.
In short, we had been there before with the kids for an extended stay. We wanted to experience that slow pace of life again. Since we both work online and we weren’t happy with the school situation anyway, why not?
Well, change is not easy for individuals with ASDs, no matter how on board they are with the change.
This change in routine led to extraordinary events — public, dramatic meltdowns and private heartbreaking moments of crisis complete with furniture flipping and violent physical attacks directed at my husband and me.
To add insult to injury, the school we chose in Costa Rica that had initially welcomed us, autism and all, changed its tune when they didn’t like ‘his type of autism behaviors’ and didn’t want him to set a bad example for the other children.
The sadness persisted for me but my anger had a new target, the school.
We sought the help of an educational psychologist. She felt that anxiety was the real behavioral culprit and wanted a psychiatric assessment.
Costa Rican physicians are readily available as part of an excellent health care system, but they are notorious medication prescribers. So we turned to our family doctor in Ottawa. She told us it would be 18 months at least before he could see a psychiatrist.
Through family, we learned of the Child Mind Institute in New York. A couple of Skype calls later, my son and I were booked for a four-day evaluation and treatment in Manhattan.
On the first day, I sat in a room with two psychologists and a psychiatrist. At the end of the session, one said to me,
“We’ll get to the bottom of this.”
I exhaled and a weight was lifted. Someone else would share my burden.
Over the next few days, there were hours of tests and a couple of therapy sessions to take care of a severe phobia. We finished the week with a Skype session with my husband who stayed behind in Costa Rica. We were presented with findings, specific deficits (which we had had no idea about) and some recommendations.
A week or so later we got a report with more recommendations for home and school.
The diagnosis of ASD with a healthy side of anxiety was confirmed. I could now safely and effectively move into the next stage of autism diagnosis — Acceptance.
What was different this time?
With our first diagnosis we were given a word, a name, a diagnosis without any idea about what to do. We had no tools. All we had was a label — a stigma, and a feeling of hopelessness and desperation.
This time, we had a plan of action, and a team of supportive professionals behind it.
We spent about $20,000 on this trip . We are lucky we could. It was worth every penny. I would do it again tomorrow. I would take on debt to do it again.
Acceptance Insights Action
So, with acceptance, the denial faded and there was no more anger or sadness.
The recommendations were simple, straightforward and so counterintuitive.With these tools we moved right into the fifth and final Action stage.
Within weeks we had a different child. We had challenges with school (to say the least) and we opted to switch to a small, joyful, flexible school where both of our kids were able to grow emotionally.
And since then, we have only seen more growth.
It took a crisis for us to seek out tools. An assessment and diagnosis was, and is not, enough. It doesn’t take long for a family’s life to change once they have the right tools, often very simple tools, to help their child.
Who Is My Son with an Autism Spectrum Disorder?
He’s a fun and funny 10-year-old boy and he is many things:
He’s a surfer and placed first in his last surf contest.
Now that we are back in Canada:
He plays competitive basketball and recreational hockey.
He’s made friends at his new school and looks forward to taking up snow-boarding this winter.
His French is not yet as good as his fluent Spanish
When asked, he uses clear concise language to tell us how he feels, and he gives great though infrequent hugs.
Action Phase Two — Community Involvement
We are now using our energy, our story, and our resources to make our experience useful to others who may find themselves still in the first three stages of autism diagnosis. In fact, this is the first time I am writing openly about my son’s diagnosis , now that the denial has finally abated.
Though our son is able to participate in mainstream sports programming, we noticed a void for many families living with autism in our community. We are motivated, inspired and compelled to create something for these families because sport and physical activity are such a big part of our lives. We see their importance in our son’s life, his learning, his growth, his self-esteem and his overall mental and physical health.
For this reason, we have created Ausome Ottawa. Whether or not you or someone you know have been through the first four stages of autism diagnosis, denial, anger, depression, acceptance, I want to encourage you to join me in the fifth stage — in action and in support of this initiative — you have the opportunity to enrich the lives of children, their families and the greater community with your involvement.