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When to Believe an Autism Specialist

I had just turned 23 when an orthopedic specialist told me I’d never walk right again.  I’d been an above-average tree planter, occasionally putting in the highest number of trees per day.  And I’d done it for years, to pay for my university education.  But then my knees started to get jabbing pains.  With every step.

I’d stopped being able to kneel when I was 7, because my knees hurt too much.  And through the intervening years, there had been more and more pain in my ankles, knees, and hips, and other activities that “hurt too much” to continue doing.

However, because I did a lot of low-impact, high-endurance things like cross-country skiing, I was very strong and fit.  I walked or bicycled almost everywhere.  I loved spending time outdoors, and often found a fieldwork position when the two months of the Ontario spring planting season were over.

So when this specialist told me I would have to have radical surgery, each leg broken in two places and rebuilt, and that I’d never walk right again, I was literally reeling.  He even asked about what my career plans were, and told me I’d never do field work again.

When I tried to leave the facility where I’d been given that news, I couldn’t orient myself.  I was looking at the busy city street from the doorway, and couldn’t figure out where I was, or what to do.  Have you ever been in shock?

So I went back and sat in the lobby until I could figure out one good thing to do.  It took me about half an hour, but I thought my grandmother might be able to help.  I found a pay phone, and called her.  It didn’t take her long to realize I wasn’t firing on all cylinders.

She told me to stay put until she came into the lobby to get me, and 45 minutes later, she was ushering me into her car.  As she drove me out of the city up to her farm, she asked me gentle questions.  I answered as best I could, struggling to chain words together coherently.

I don’t remember the ride in more than a fuzzy way until she slowed, pulled over to the side of the road, and stopped altogether.  I’ve never seen her look so angry ever before, or ever after.  She lifted her twisted, arthritic hands in the air, and hit the steering wheel, hard…

Ow… I could feel how much that hurt like it was my own hands, and it shocked me back out into myself again, as she rounded on me.

“How DARE he play God!” she roared.  And she told me, with every ounce of will in her,

“Never, ever take the word of a single doctor, a single specialist, a single adviser.  This is your body, your health, and your life, and no-one knows it better than you.”

“You go look things up.  You go ask more questions.  You go get a second opinion, a third, whatever it takes for you to be confident that you’re making the right decision.  You’re the one who has to live with the consequences.”

And then she shared just a few of her own experiences as a nurse with me.  I won’t get specific, but I never looked at an authority as superior to me, or as all-knowing, again.  Specialists, I found out, are human too.

Jackie sitting up in a hospital bed getting a full-leg cast removed.

J’s Cast Removal – Maggie Mackay

FYI, it was the 5th specialist who was able to explain why every other MD had a different opinion about what was causing my pain, and offered not only a solution he promised would keep me walking for at least 20 more years, but some of his patients to speak with who’d been through the same thing.  The photo is one taken by a good friend after the surgery.

So what does this have to do with when and whether to believe an autism specialist?  Or some other health or therapeutic professional who gives you an opinion about autism?

Just so you know, the next specialist, who had a sweet young intern following him around, told me that this pain in my knees was normal for teens my age, and that I’d grow out of it.

With my grandmother’s words ringing in my ears, I politely but firmly told him I wasn’t a teen, and asked him if he’d read my chart… at which point he ushered the intern out and got rid of me as quickly as possible.  Essentially, he was brushing me off with an “it’s all in your head” or “you’re making a mountain out of a mole-hill” comment.

The contrast between the two specialists, who saw me only days apart, was about all the proof I needed that my grandmother spoke true:  I had to figure this out for myself, and I sure didn’t know who or what to believe, yet.  I got it sorted, though, and I plan to keep happily walking, pain-free, until I die!

So back to autism.

One of the most difficult things about an autism diagnosis here in Canada is that most medical doctors will either:

  • do what the first orthopaedic specialist did:  provide only one dire option that leaves no room for hope for the future, i.e. “your autistic child will never do more than this“.
  • do what the second orthopedic specialist did:  brush off your valid concerns about illness and pain, when you could be taking really helpful steps, i.e. “your child will grow out of these behaviours, there’s nothing wrong“.

Even when your child receives a diagnosis, the only answer our Canadian doctors are trained to give is a drug for sleeping, a drug for calm, a drug for digestion, a drug for depression, a drug for allergies, a drug for any other symptom that can currently be addressed with a drug.  If it can’t be addressed with a drug, the almost-exclusive response is “nothing can be done“.

But when you look through the medical journals that these doctors are trained from, there is so much that can be done for children with autism, as well as for children with a whole host of low-grade health problems and learning challenges which haven’t yet reached the weight to tip a child into autistic challenges.

It is very rare to find a medical doctor who will step outside his or her primary training around treating illness by suppressing symptoms with drugs, and look for more answers.  Most who do are those who have a child with autism, themselves.

So I’m going to encourage you to put on your big-person’s thinking cap, pull on your take-action boots, and step up to the challenge you’ve been given.

  • Do you have the time, resources, and knowledge to read the medical research yourself?  If so, do so.  If not, find someone like me who does, who will summarize it for you.  Ideally, several someones!
  • Do you have the time, resources, and knowledge to seek out the full range of health support options and interventions known to support autistics, and evaluate these possibilities in light of your specific challenges?  If so, do so.  If not, find someone like me who does, who will summarize this for you, giving you a short-cut to potential starting places.
  • Do you have the skill and experience to take the unique blend of challenging symptoms of autism you’re observing, and use that information to prioritize your approach to health?  If so, do so.  If not, find someone like me who can do this for you and give you a map… and NEVER assume there’s “one true way”.
  • Do you know what the health professionals who are restoring health for autistic children insist that all their clients do – indeed, refuse to work with families until these actions are taken?  This is what two of my online programs are about.  If you know these steps and actions, is something holding you back from doing them?  If you don’t know about them, find out – they are healing, all on their own, and no-one gets results without them.

Before you see any professional about autism, before you pay large fees for professional support, I encourage you to evaluate:

  1. whether that person’s work is a priority for your particular challenges
  2. whether that person is someone you will work and communicate well with
  3. whether that person has an open mind and the collaborative ability to work with alternative specialists
  4. whether that person is familiar with parent and spectrum adult findings – because few are!

If you’re going to trust someone who specializes in autism, I beg you to do your homework!

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