[Feel free to check out Part I of this series if you missed it!]
In last Friday’s blog post, I expressed frustration at the fact that we’ve had research on adult ADHD for over a decade, yet it’s still difficult to find information, more difficult to find support, and even more tricky to find an expert to diagnose you.
Today, I’ll share my bizarre journey into the netherworld of adult ADHD. It’s a labyrinthian journey: pack a lunch ‘cause it’s rife with false turns and dead-ends…you’ll probably need a snack.
On the other hand, it’s such a frustrating trek, full of villains and false friends, you’ll probably lose your lunch if you get as angry and upset about it as I did. Then again, I’m a drama queen…or so someone once told me. I was so mad I could spit.
May only the bravest-of-heart blog readers read on…Ready? Let’s go.
Part II – How to Annihilate an Adult ADHD er
ADHD ers are nothing, if not tenacious. In the face of a lack of resources, I decided a couple of years ago to start my own adult ADHD support group. I contacted Children and Adults with Attention-Deficit/Hyperactivity Disorder, aka, C.H.A.D.D., with chapters all across North America. C.H.A.D.D. is said to be the largest non-profit organization in North America “serving individuals with AD/HD and their families.” Why recreate the wheel, I rationalized.
Their response was anything but rational.
We don’t want your kind around here…
When I received my copy of their C.H.A.D.D.-CANADA CHAPTER AGREEMENT, imagine my shock in learning that, as an adult with ADHD, I was barred from starting my own chapter. Yup. You read that right.
According to the legal agreement, under Section 3, “Duties of Chapter,” paragraph 3a., page 4 of the document:
“…The Chapter Coordinator and at least one other of these officials must be the parent, grandparent or legal guardian of a child with attention deficit disorder…”
(The Chapter Coordinator is the person applying to start the support group. In this case, Me).
While I’m fairly certain that any child of mine would have been a rabid out-of-control ADHD er, as it happens — I have no children. Therefore, technically, this agreement excludes me from starting a Chapter.
So much for being proactive.
This stipulation baffled me, as C.H.A.D.D.’s mission statement says that C.H.A.D.D. Canada’s aims are first and foremost, to help support, educate, etc., “…individuals with ADHD, and those who are [sic] for them.”
It listed “individuals with ADHD” as first priority. Their print brochure and newsletter echo this sentiment by citing their mandate as serving both parents of children with AD/HD as well as adults who themselves have AD/HD.
Giving C.H.A.D.D. the benefit of the doubt, I wrote to them suggesting that perhaps they’d sent the wrong document in error? Perhaps they thought I was interested in their historical roots (the contract they sent was dated September 29, 1992).
I speculated that C.H.A.D.D. might have originally been created to serve the interests of “parents, grandparents and legal guardians,” but, based on their current mandate as advertised, has since evolved to support adults with AD/HD also. I politely asked them to send me a current version of their Chapter Agreement.
Their answer? That is the current Agreement.
If the largest ADHD support group on the continent infantilizes adult ADHD ers by not trusting them to start their own chapters, where does that leave us?
Adult ADHD? What adult ADHD?
Ostensibly, to wait until we’re legitimized in the next version of the DSM, and for the effects to trickle down into the healthcare professions (physicians, psychiatrists, etc., many of whom are aware that ADHD exists in adults, but who don’t have to deal with us, or even acknowledge that adult ADHD exists because, technically, it doesn’t), is going to take a long time.
All growed up and nowhere to go…
My hopes were dashed yet again when I received an even worse response from the Canadian Mental Health Association (CMHA). Their website was the first place I turned to after my diagnosis.
Under the heading Attention Deficit Disorders the site mentioned only children with ADHD. Not a word about adults. Nada. Rien. Nothing. Zippola. At the time of this posting, that remains the case.
Although I kindly offered to write a section pertaining to adults – I am a professional writer, after all — my offer was declined.
You can’t be serious…
I decided to visit our local branch of the CMHA. I’d seen a poster on their window listing the most common mental health disorders. I squinted, trying to find ADHD. It was nowhere to be found.
I went in, and asked why it hadn’t been included. The answer?
“We only deal with SMI’s.”
Ok, first of all, where do they get off using industry-specific acronyms with some stranger who just wandered in off the street with a sincere inquiry (aka, me). I was even polite when I asked (honest).
I felt belittled by having to ask, “What’s an SMI?”
Apparently, it’s code for “serious mental illness.”
OK, now I was boiling mad.
If being in financial dire straits, unable to focus for five minutes, having lost umpteen relationships, alienated friends, having been shunned by family members and having no emotional or psychological supports who knew anything about ADHD, and no access to financial support isn’t serious, I don’t know what is.
Clearly, there’d be no support group in the offing here. They did, helpfully, drag out a copy of the DSM IV to confer over whether ADHD would appear in its pages. The consensus was, not.
Grrrrrrrr…these people were driving me crazy! Ironically.
I can’t have ADHD, I’m highly intelligent. Now that’s comforting…
This was all happening within the first few disorienting, emotionally charged weeks after my diagnosis.
Fortunately, I’d begun medication and it was helping to calm me down. But the week had started with a shop owner declaring to me that doctors had told her they thought her son had ADD, but she knew he didn’t, because, as she said, “He’s highly intelligent.” She might as well have slapped me across the face.
I’m Zoë Kessler and I have ADHD
At the end of those few weeks, I resolved that I would not hide. I would be the loudest, proudest, mouthiest ADHD warrior there ever was. While I’m not there yet, I’m happy that I’ve been given the opportunity to explore the issues here at Psych Central. Someone’s gotta stick up for us. Might as well be me.
And kudos to Dr. John Grohol, who had the foresight to initiate ADHD blogs here at Psych Central to fill in a huge gap left by the rest of our supposed legitimate mental health resources.
For some of the few websites with information for adult ADHD ers, check out my blogroll at About ADHD from A to Zoë .
Ok. Is everyone alright? Breathe…and hang in there, we’ll get through this. Together.
In the meantime, for some excellent resources for ADHD adults online, check out my Blogroll (you’ll find it in the left margin, just below my Archives).
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