What to look for when getting diagnosed with Adult ADHD

[Anonymous]

My name is Nichole. I’m a registered nurse, recently diagnosed with Adult ADHD – combination subtype. I’ve just finished my journey through the meat-grinding, mind-losing, patience-testing process of getting diagnosed. I want to share what I have learned.

1) Don’t stop educating yourself. Read everything. Most books about ADHD are set up to accommodate the way we read, i.e.: a little at a time, jumping from chapter to chapter, OR so hyperfocused you get through the whole thing cover-to-cover in 4 hours.

2) Stop blaming yourself. Easier said than done. And much easier on medication than not.

3) (Try to) be patient. Getting diagnosed can be a long, arduous, tearful, frustrating journey. For example, I began having my suspicions in November 2011 when I lost my job. I was diagnosed this Wednesday, May 16th, 2012.

4) Don’t stop living. As you approach your final report day, you will get emotional. I got very depressed. Your life does not depend on this diagnosis, even though it feels like it. Get out and do the things you love.

5) Start remembering. You will be asked about your childhood. Whenever you remember something that might be relevant, write it down. What did your parents think of you when you were young? Write that down. Doctors want to know about behaviour as early as <7years.

6) Bring an informant with you. We’re not great at remembering things. Sometimes we’re not aware that our behaviour is abnormal. But I guarantee your wife, husband, partner, roommate, parent, neighbour sees it all. Make sure your informant is actively involved in the process. They should be asked to fill forms and scales too. Any clinic/doctor that does not consult your spouse/partner is missing a huge piece of the puzzle. THIS IS A RED FLAG. Clinicians should encourage spouse/partner involvement, not discourage it.

7) If you’re married, common-law, engaged or in any type of long-term relationship, read “Is it You, Me or Adult ADHD?” and then let your spouse/partner read it. Preferably, you want to do this before you start your diagnostic process.

Know how to navigate the health care system, and advocate for yourself. If it doesn’t feel right, it’s not. In Ontario you have two main avenues to get diagnosed:

(a) Private Clinic

(b) Referral to Ohip-covered psychiatrist

Going private can put you anywhere between $1000 and $3000+ in the hole. These services are quick (less than a month wait times for your first appointment) — GET PUT ON THE CANCELLATION LIST! You are paying for the BEST-of-the-best in ADHD. Makes sure the clinic offers Adult care too; some only do children.

Referrals puts you at the mercy of your family GP. (1) GPs don’t know a lot about ADHD in kids, let alone adults. (2) They probably don’t know there is a huge difference, and will likely send you to an general OHIP-covered psychiatrist, thinking they are all equipped to do the job correctly.

The truth is most psychiatrists will admit they don’t know the first thing about diagnosing ADHD in child or adults. The field is SO new… like infant-new. There isn’t even Adult ADHD criteria in the DSM (psych bible) yet!!!

Lastly, the wait-lists can be atrocious. I waited almost three months for an initial consult with a referred physician. He wasted my time and my patience. Eventually I sought a 2nd opinion when I realized he had no idea what he was doing. [More incentive to read read read…]

9) If you choose a private ADHD clinic, look for these specific things:

(a) You want an MD on staff so they can prescribe you meds if needed. Some family doctors are not comfortable prescribing stimulants (first line treatment for ADHD). If your clinic is all psychologists or PhDs, they will not be able to prescribe OR counsel you on ADHD medications (and likely, neither will your family GP).

(b) Make sure they offer coaching / psychoeducation. There’s nothing worse then starting a relationship with a clinic, getting diagnosed and then having to restart the process by going elsewhere for counselling. Most recent evidence shows that the most effective treatment is medication PLUS coaching / counselling.

(c) Go somewhere close, if possible. You’ll be making many trips for each of your testing days, and you have to refill scripts IN-PERSON for stimulants (not over the phone). Make sure you can get there. Show up ON TIME for your appointments. Private clinics are businesses. Just like they will give you your FULL hour or two of service, they will do this for their next client. Being late cuts into the time that you’re paying for. Don’t be late.

I hope this helps anyone who reads it. If you have any advice, please feel free to reply-post.

Good Luck!

Nichole,

Toronto, ON

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[Scattybird]

Nichole – thank you for sharing your thoughts and advice.

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