Interview Dr. Duncan McKinlay: Tourette Syndrome, Work, and Book, Nix Your Tics!

Interview Dr. Duncan McKinlay: Tourette Syndrome, Work, and Book, Nix Your Tics!

For our Author Interview Series, we are honored to introduce you to a renowned fellow Canadian, Dr. Duncan McKinlay author of Nix Your Tics! Eliminate Unwanted Tic Symptoms  A How-To Guide for Young People. Duncan McKinlay, the psychologist with Tourette himself,  has become the perfect mentor for all families coping with Tourette Syndrome. Dr. Dunc, as some call him, reaches out to families and youth struggling with Tourette syndrome through his work, publications, presentations, wonderful web site, and by interviews like this one. We are so pleased to welcome him to Special Needs Book Review.

I have a daughter and granddaughter with Tourette sydorme and our connections with Dr. McKinlay go back 17 years.  When our daughter was diagnosed with TS, at the age of 19, we subscribed to the only publication we could find to help us understand what all this meant. One of the contributors to The Green Leaflet,  published triannually by the Tourette Syndrome Foundation of Canada, La Fondation canadienne du syndrome de la Tourette, was a young man, almost our daughter’s age, who wrote about his struggles and gave encouragement to others.  Well Dr. McKinlay, I can now thank you for all those helpful articles.

1.            You went on to much greater things. What are your proudest accomplishments considering what your life could have been if you had not forged forward to become a survivor?  Montel Williams stated about your documentary! Life’s A Twitch! , “Those of us who are differently abled have to choose between living as a survivor and living as a sufferer. Duncan McKinley is a shining example of how each of us has the power to define our own life. He is an inspiration to us all.”

Dr. McKinlay>> I’m not sure if they were, ‘greater’ things – just ‘different’ things :) Certainly I’m pleased that I’ve moved beyond simply sharing my experiences and into a position where I can make real differences – not just in the families I work with, but also in how mental health professionals in Canada and beyond will understand and treat TS. Sharing my experiences early on was important for raising awareness, for opening some doors, and probably for my own healing as well, but this newer chapter of my life is exciting because of the opportunities it presents to actually change things for the better for future populations I’ll never meet, and who probably will have never heard of me, long after I’m gone.

2.            Which do you think has been most helpful to individuals with Tourette syndrome and their families, your documentary, your website (both entitled, Life’s A Twitch!), or your book Nix Your Tics? How do you continue to counsel individuals with Tourette?

Dr. McKinlay>> From feedback I’ve received over the  years, I would say that all three play complementary roles, each with a progressively narrower focus. The documentary, which by the way I’m thrilled is now freely available to view via online streaming and accessible through my website, has been utilized quite a bit for educational purposes – it has been shown in school in-services, and it has been used for training teachers and future mental health professionals.  For that reason, the documentary is probably a good, ‘entry level’ foray into the world of Tourette Syndrome and so has the broadest appeal.  The website, on the other hand, delves into much more detail about living with these disorders than a 30 minute film ever could.  It also more directly addresses more objective issues around (for example) assessment and treatment and what the current research says.  In other words, the website begins to move beyond simply who I am as a person and provides an environment for those with more than a passing interest in Tourette Syndrome to gain knowledge and resources. Finally, the book is intended for a very specific audience – youth and young adults with tic disorders themselves who wish to target particular symptoms for management. Aside from using some of my own experiences to demonstrate or illustrate various aspects of treatment, “Nix” is all about taking an evidence-based treatment which has now been very well established in the literature and making it accessible to those who need to understand it the most – the kids.

3.            Our family appreciated Nix Your Tics! to read with my granddaughter who is 9 yrs. and has Tourette. In your book I love the way you make your reader feel like he is having a casual chat with you. Your message is so upbeat and your use of humor is another plus. Is there another book on the horizon?

Dr. McKinlay>> Thank you – I very consciously chose a writing style which, while nonconventional to academics and eyebrow-raising to some of my colleagues, was very much directed at my imagined target audience – someone in early adolescence who either doesn’t particularly like to read or who has a hard time reading, and so has little time for (or interest in) pretence or preamble. Many children I work with would fit this description, so if they are willing to invest the effort and, more importantly, if they are willing to come out from behind their defences to attempt something new that might improve their quality of life…. well, I very much want to reward that kind of courage and trust with something worthwhile to them.

In terms of another book, I first need to get out of debt on the first one! <laugh>.  More seriously, though, I haven’t any plans at the moment. I feel strongly that a person should write a book if they truly have something original or important to contribute. Any new thinking I feel I’ve contributed to the field of Tourette Syndrome I’ve already written about (for example in my recent article in the Journal of Clinical Psychology Practice), and any new advances I’ve been a part of are contained in “Nix” and an upcoming March 2012 article I co-authored for the Canadian Journal of Psychiatry.

I suppose I could write a book about my own experiences of living with Tourette Syndrome, but I’ve already blogged so much on this topic, (in my two, cyber-columns’ archived on my website, back before there was even such a thing as blogging!) T(r)IC(k)S (which you would have been reading in the Green Leaflet) and, “Disinhibited Thoughts“, which at the time I syndicated to various chapter newsletters.

Also, as a psychologist working with individuals with like diagnoses it is important I remain acutely aware of the dangers inherent in people mistaking what was important to ME as being a broad-reaching clinical recommendation to THEM. We all have our individual profiles and life factors which could mean that what was right for me ISN’T right for someone else.  Lastly, there are already multiple books by multiple individuals with TS all about themselves, and I’m not so self-important that I think anything I might say about my own experiences would be terribly unique compared to what is already out there.

4.            From your site I find, ”Dr. McKinlay is a registered Psychologist with the College of Psychologists of Ontario, practicing with children and adolescents in the areas of clinical and school psychology. He is currently working for the Child and Parent Resource Institute (CPRI) in London, Ontario, Canada. Any requests for clinical service must be directed to the ‘Brake Shop’ clinic. Tell us what a typical day in the life of Duncan McKinlay is like.

Dr. McKinlay>> Symptom-friendly <laugh>. I’ve had the good fortune of being in a position where I’ve been able to implement a great deal of structure and predictability, yet also variety, into my work life. I have days scheduled for assessments and consultations, days scheduled for presentations, training, and school assemblies, days scheduled for group treatment programming and supervision, and days scheduled for working on program development.  Each of those (and other) kinds of days in my professional life have a ‘routine’ to them which provides a comfortable and necessary consistency to my days, but there is a flexibility in when and how many of each ‘kind’ of day gets booked.  By accommodating my own skill deficits in this and other ways, I’m able to take my own neurology out of the picture as much as possible and focus on the needs of others.  What’s most important is that when I’m actually ‘on’ – when I am in a clinical situation working with a patient, a family, a school or agency – it must be all about them. That’s not the place for my own particular symptom needs to at all influence the picture.

I suppose one way in which my days are not at all, ‘symptom-friendly’ is when it comes to my tics. Ironically, even though I literally, ‘wrote the book’ on how to manage tics, the professional life I’ve chosen demands I continually do things that lead to exacerbations of my own tic symptoms and make management of them much more difficult to do. I’ll continue to break my own rules, though, because right now that seems a fair trade for ensuring awareness, education, and use of this worthy and effective new treatment for tics becomes more mainstream.

Dr. Duncan McKinlay author of Nix Your Tics! Eliminate Unwanted Tic Symptoms  A How-To Guide for Young People5.            I read you do “Nix Your Tics!” Appearances and/or Talks on your own and that you also do presentations through the Child and Parent Resource Institute (CPRI) in London, Ontario and the Ontario Ministry of Children & Youth Services. Do you enjoy doing these? What feedback do you receive that makes doing these events all worthwhile?

Dr. McKinlay>> I do enjoy them very much, yes – there’s nothing like watching a light-bulb go off in some audience members eye and knowing that some child or student’s life just got better. The vast majority of presenting I do are in schools (to students and also to educators); after more than 700 presentations to tens of thousands of people, what becomes so clear to me is how the vast majority of harm those of us with TS and associated disorders are subjected to is caused by ignorance. Sure there can be malice too, but even much of this malice is created by the ignorance and misinformation my presentations aim to eliminate. I don’t tend to do, ‘strategy’ presentations, as an unlimited supply of the best strategies in the world aren’t going to make a lick of difference if a person is unmotivated to use them. Instead, then, I focus on those light-bulbs – helping people to, ‘get it’. Once they do, half the time they don’t need me to tell them anything more because from this new perspective it is suddenly more than apparent what to do and what not to do. People aren’t stupid.  They are just oftentimes tragically under-informed.

One interesting (and perhaps surprising) thing I can tell your readers are the passionate reactions I routinely get from teachers. Educators who approach me afterwards are either in tears, quite angry, or eagerly anticipating the next time a particular student will be in their classroom.  Each of these reactions is explained to me in the exact same way: “why didn’t someone tell me all this sooner?!”

6.            Do you think if the tween Duncan with Tourette was growing up in 2011 it would be easier than when you were growing up? What still has to change to help youth with Tourette have an easier time at school and in the community?

Dr. McKinlay>> Perhaps, but then again ‘easy’ is highly overrated.  The only way to create a pearl is for an oyster to endure a great deal of irritation, and many qualities of myself were forged through many painful struggles over a great many years. I’m not sure I’d recognize myself, or be in the successful position I’ve been in, were it not for my TS.  We can kill with kindness, and I think our present society of ‘helicopter’ parents and overprotection is something for which we need to be quite vigilant.

If we changed the question to how to continue making things more FAIR for youth with TS, I think in many ways we are on the right track but need to realize some of these directions a bit more fully.  For one thing, we need a new formal identification for TS and associated disorders within the school system – one I would call, “Neurodevelopmental” that would include accommodations which better capture the true issue (that of dysregulation) rather than the red herring (‘behaviour’). Also, while we in theory protect individuals with disorders from discrimination, how that discrimination takes shape with TS and associated disorders must be better recognized and protected against.  For instance, we live in a culture which hasn’t yet recognized that taking advantage of a person’s ‘leaky brakes’ – capitalizing on the fact that everyone in the room thought it but YOU said it – is discrimination.

7.            The “view site stats” on your site registers over a million (1,094,000) visitors! Congratulations on your great website design with its easy-to-use format and numerous pages of content/information. This site is also where your book, Nix Your Tics! can be bought.  Where else can we buy your book?

Dr. McKinlay>> In addition to ordering the book online via a link on my website, visitors can also download a printable form from my website for ordering the book by mail, fax, or over the telephone. Caversham Booksellers and Parentbooks (both based in Toronto, Ontario, Canada) also carry “Nix”, for anyone local who may wish to drop in or who might be attending a workshop where one of these bookstores has set up a display. Finally, the Tourette Syndrome Foundation of Canada at present has a box I’ve left with them, should they wish to have any books on-hand to sell at any of their functions.

I should say that it is unusual I have not been selling my book at my presentations – for most independent publications, 90% of sales occur at the back of the room (which might help to explain why I expect to be old and grey before I ever break even on “Nix” :)  The reason for this is because I elected to do virtually all of my presenting within my role as a public servant for the province of Ontario. This meant that those who booked me for presentations had no presenter fees to pay, but it also meant that selling a private book at the same time would be unethical and onstitute an unacceptable conflict-of-interest.

8.            Thank you so much for all you do to help families cope and taking the time to answer my questions. One last thing, please give us other links where our readers can follow you.

Dr. McKinlay>> You are most welcome – it was a pleasure and I enjoyed the opportunity!

Besides my Life’s A Twitch! site  (www.lifesatwitch.com), interested readers who have bought the book can join a Facebook group I created to enhance and further the “Nix” experience.  This Facebook group can be found via my website or by going directly to http://www.facebook.com/groups/48846311927/.

In 2006, the Government of Ontario (The Ministry of Community & Social Services, The Ministry of Children & Youth Services) honoured Dr. B. Duncan McKinlay with the first ever Sandra D. Lang Memorial Award. Finally, I DO have a “Nix” Twittet account (https://twitter.com/nixyourtics) but I must confess that I rarely send any tweets – although, when I do, it is for a very good reason (e.g. to notify people of a new research study furthering the evidence-base for “Nix”, for example).

Dr. McKinlay has won numerous awards. In 2006, the Government of Ontario (The Ministry of Community & Social Services, The Ministry of Children & Youth Services) honoured Dr. B. Duncan McKinlay with the first ever Sandra D. Lang Memorial Award. The award recognizes exceptional contributions to children, youth, and families in the province. An expert in the assessment and treatment of children and youth with Tourette Syndrome and associated disorders, Dr. McKinlay created the Brake Shop clinic (‘for when it’s hard to stop’) at the Child and Parent Resource Institute (CPRI) in London, Ontario.

This post was written by Lorna
Lorna d’Entremont: Vice-President of KidCompanions, mother of three, grandma of 5 and wife. Retired teacher and special needs advocate. Throughout she has taught all levels from grade 2 to grade 9. Lorna loved teaching and enjoyed seeing the students progress in the school system. During her 30 year career she took a few years off to raise her three children.
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