Mental Health Awareness Week kicks off today, and in honour of raising awareness, we will be sharing some important facts about ADHD throughout the week.
Many people don’t realize that ADHD is actually a serious mental health condition. ADHD is a complex, multi-faceted, often life-long medical neurobiological disorder that impacts the nervous system. ADHD affects more than one million Canadians, and is the most common childhood mental health condition worldwide.
Health Canada has just released an information update stating that clearer warnings about risk of suicidal thoughts and behaviours will be included in the prescribing information for all ADHD medications:
http://healthycanadians.gc.ca/recall-alert-rappel-avis/hc-sc/2015/52759a-eng.php
Previously this warning was only included on Strattera (Atomoxetine). It is very important to read the updated information thoroughly and pay attention to the specific language used by Health Canada. Health Canada states that there is little evidence that ADHD medications cause suicidal thoughts and behaviours, but that they may possibly contribute to the risk. Health Canada has not shared what triggered the update at this time other than saying there have been some reports. Since ADHD in itself increases the risk of suicidal ideation and behaviours physicians treating patients with ADHD are already aware that monitoring for these symptoms is important. Additionally, ADHD can commonly occur along with other disorders such as depression and bipolar, so physicians are aware that additional disorders such as these need to be screened for during the assessment process. However, an added reminder to physicians, caregivers and adults taking the medication to monitor for changes in mood, thoughts, feelings of depression and suicidal behaviour especially when medication is started, increased or even stopped seems to be a sensible suggestion.
Awareness of potential side effects, even when the risk is minimal is important, but should not lead to panic or stopping the medication. Health Canada has also stated very clearly that the benefits of medications for ADHD still continue to outweigh the risks. Parents of children taking medication for ADHD and adults taking the medication should not be alarmed by this warning and they should not take their children off the medication especially without first speaking with their physician. If any of these symptoms are present caregivers and adults should be reporting these to their physician immediately. Treating any medical disorder with medication is always a matter of assessing the risk benefit ratio. Physicians follow this practice when prescribing medications. Every medication has a risk of side effects, but not treating ADHD also has significant side effects. If you have concerns speak to your physician.
CBC’s The Current, which I listen to daily, struck close to home for me this week with two stories that might seem unrelated to ADHD, but actually are perfect examples of the problem we continue to see with reporting on ADHD.
The first storey was an interview with writer John Semley where he questioned whether media should even be interviewing “anti-vaxxers”. He felt that media should not be giving a voice to those who were spreading untrue and scientifically unproven information causing confusion and ultimately harm to the public. The point was also made that by striving to give both sides of a story, journalists often misinform the public by allowing them to think that an issue is still being debated even when 97% of experts strongly support one side of the argument, as in the Global warming discussion.
The second was a discussion on an article published by the Toronto Star entitled “HPV vaccine Gardasil has a dark side, Star Investigation finds.” The guests felt that this story was just one more example of a news article on a public health issue that got it wrong due to overzealous reporters attempting to sell more papers and doing harm. Fortunately a rebuttal was quickly sent to the Star signed by over 60 doctors addressing the use of anecdotal stories based on correlation versus causation rather than scientific research. In fact world-wide research found that Gardasil has no dark side. The Star has conceded that the headline was misleading, but Anna Marie’s guest pointed out that it was really a case of poor medical journalism.
How does all of this fit in with ADHD?
For years now I have been voicing my view that media reporting on ADHD is very similar to their reporting on climate change. For decades, whenever a story or interview on ADHD occurred the media trotted out one or two naysayers with an agenda, to be interviewed alongside renowned medical ADHD experts. ADHD is not real, a conspiracy between physicians and pharmaceutical companies, due to bad parenting, too much sugar or TV, and a way for lazy parents and teaching to drug these children into compliance. We are forced to deal with this misinformation, which has long been disproven many, many times over every single day. We are also able to witness the damage it has caused families living with ADHD through stigma. But even more damaging is the confusion, doubt and fear it causes about the disorder, resulting in a hesitancy to accept the diagnosis, and reluctance to treat it.
In addition whenever something the least bit controversial, or something the media can make controversial, comes out about ADHD our phone rings off the hook, looking for a quote or a family that can be trotted out before the camera. But, trying to convey up-to-date medically scientifically based information through the media is almost impossible unless it too can be made to seem controversial.
Last year when Dr. Richard Saul published a book entitled, “ADHD Does Not Exist: The Truth About Attention Deficit Hyperactivity Disorder” the media went crazy. The author must have been exhausted with the number of interviews and story after story was written. In fact the book mostly pointed out that other things can cause symptoms that look like ADHD and need to be ruled out as causes before a diagnosis should be made. Any ADHD clinician worth their salt would have responded with “obviously”. It certainly showed what a good marketer or publisher, who most likely chose the title, could accomplish. Yet again, controversy about ADHD is what the media is drawn to, no matter how stupid the study, article, or book is.
Would papers publish articles questioning the existence of depression, even when they are just opinion pieces? Of course not, they would be tarred and feathered. Yet ADHD which has just as much medical science behind it continues to be fuelled by controversy.
In closing, I must say that I give CBC credit for these two interviews. When interviewed by Anna Marie Tremonti myself a couple of years ago for a show called “Diagnosing ADHD: Are we getting it right?” I found the questions balanced with a goal of seeking good research backed information. Not all CBC stories have been this way, with one even leading to us writing in and complaining.
I also applaud the physicians who spoke out about this so quickly and eloquently. Unfortunately too many physicians working in the field of ADHD, probably justifiably, fear being misquoted and labelled as being in the pocket of pharmaceutical companies to come out and be so vocal.
Heidi Bernhardt
Keep your eyes out for our article in upcoming issues of Metro! CADDAC had the chance to speak with Metro news about October`s ADHD Awareness Month, and the article will be featured in issues across Vancouver BC, Calgary AB, Toronto ON, and Halifax NS. The article features an interview with comedian, actor, and ADHD advocate Rick Green, as he speaks candidly about his experiences and how ADHD has impacted his career. The article will be posted on Thursday October 15th, 2014 – feel free to share widely!
I received a call today regarding our post entitled “Vancouver’s Battle Against Adult ADHD Stigma” alerting me that clarification on CADDAC’s position is required.
I sincerely thank the caller for taking the time to speak to me about their concerns.
Our comment was in no way intended to be political or favour one councillor over another.
Our intention was to highlight the message that could be taken from statements made. If an employee requests assistance for their disability, especially adult ADHD, they are seen as not being capable of the job, or playing the “poor me I have a disability card”.
I hope that this is not Ms. DeGenova's position; unfortunately it could be interpreted (or misinterpreted) in that way. As stated in the blog, questioning the expense, or any expense, is not the issue. Our concern was that additional statements made could send the wrong message.
At this time many employees are fearful of disclosing their ADHD. They are reluctant to ask for simple accommodations in the workplace that would make them a more productive employee. They fear the stigma and being viewed as incompetent or making excuses. They worry that coworkers may resent them for receiving special treatment.
A recent Ontario Human Rights Commission (OHRC) report, “Minds that matter: Report on the consultation on human rights, mental health and addictions”, http://www.ohrc.on.ca/en/minds-matter-report-consultation-human-rights-mental-health-and-addictions
helped to clarify the duty of employer to accommodate individuals with mental health conditions. It is however also important to note that the commission states, “The accommodation process usually begins when someone identifies they need accommodation due to a disability-related need.”, http://www.ohrc.on.ca/en/minds-matter-report-consultation-human-rights-mental-health-and-addictions/10-duty-accommodate, and that it is the responsibility of the person with the disability is to ”inform their employers of their needs”, http://www.ohrc.on.ca/en/disability-workplace-roles-and-responsibilities-fact-sheet.
Hopefully this report is a first step in helping to clarify everyone’s role in assisting those with a disability in the workplace, but we still have a long way to go. If comments, unfortunate or misinterpreted as they may be are left unchallenged it furthers the stigma or the disorder.
Heidi Bernhardt,
President
What's in a Label? - Today's Parent Magazine
I strongly disagree with the recent article in Today’s parent magazine “What’s in a Label?” http://www.todaysparent.com/family/parenting/kids-health-labelling-behaviour/, which states that labeling a child with a disorder, be it ADHD, ODD, anxiety or OCD, imprisons a child and gives them the feeling of a life sentence. Liza Finlay, a psychotherapist, goes on to say that these labels allow a child to sidestep any effort to improve. My experiences are far different. From a personal family perspective as well as the perspective of someone who has spoken to thousands of families over the past twenty years, it is the lack of early diagnosis and therefore lack of treatment and access of resources that have imprisoned many children into a life of dealing with the consequences of these disorders. Left untreated, ADHD can lead to additional mental health disorders, increased rates of high school dropout, less years of education, self-medication leading to substance abuse, involvement with the justice system, as well as increased socioeconomic costs.
A psychologist who believes that the earlier mentioned disorders are nothing but behaviours, and that children can simply choose to adopt different behaviours, is an affront to decades of medical research. Does therapy combined with other treatments for these conditions prove helpful? Sometimes, but that does not mean that ADHD is simply a set of behaviours that can be unlearned.
The notion that "once a child is diagnosed with ADHD, parents stop expecting them to behave" is not only ludicrous, it is insulting. Once a diagnosis happens, parents are able to put the child’s behaviour into perspective. They are then able to focus on appropriate parenting strategies to assist that child with their behaviours and access other appropriate treatments.
I certainly agree that additionally focusing on a child’s strengths and working to increase their capacities is essential, but the best way to do this is within the understanding of a child’s overall profile. The lack of understanding of a child with ADHD can lead to all of the above mentioned consequences as well as increased childhood and family stress, family breakup, and, in extreme cases, abuse and children leaving home.
Do we need increased tolerance for those who do not fit into society’s definition of normal? Do we need to expand society’s definition of normal? The answer to both of these questions, of course, is yes. But we need to make sure that while we work on this goal, we don’t neglect the children who are labeling themselves as stupid, lazy and bad because no one has let them know why they might be finding it more difficult to succeed than their peers.
Heidi Bernhardt
President
www.caddac.ca
*** You can comment on the original article or click here to leave a letter for the editor. ***
I was notified about an incident that occurred during a Vancouver City Park Board meeting which highlighted the continued misunderstanding and stigma which still remains about adult ADHD. Vancouver Park Board Commissioner Melissa DeGenova shamed and stigmatized Vancouver Park Board Commissioner Sarah Blyth, who is the first politician in Canada to go public with ADHD.
Asking a question about Vancouver paying for the cost of business coaching is of course acceptable, making someone with a medical condition feel ashamed for asking for assistance is not.
About a year ago Sarah Blyth asked park board staff for help as she would be chairing some upcoming contentious meetings. She was offered business coaching. At this park board meeting questions were asked with regard to expenses surrounding the ADHD coaching she received. Commissioner Jasper asked staff to bring to the board any related information; and added that chairing the park board is at times a difficult job, and that if a commissioner needed help that he thought the request was reasonable. He also stated that Sarah Blyth was open about being diagnosed with ADHD.
Following this discussion, Melissa DeGenova asked why the governing party would not elect someone capable of doing the job, and further stated that she had disabilities, too. Melissa has two diagnosed Learning Disabilities: dyslexia and written output disorder, and is on the City of Vancouver Disability Advisory Committee. Ms. Blyth and others reported that, as she was leaving the meeting, Commissioner DeGenova proceeded to follow her out the door asking why she was playing the, "Poor me, I have a disability card."
To access Sarah Blyth’s description of the stigma she felt, please click on the following link or copy and paste it into your browser: https://www.facebook.com/notes/sarah-blyth/stigma/10152386409495210
To access Jamie Lee Hamilton’s account of the incident and request for an apology, please click on the following link or copy and paste it into your browser: https://www.facebook.com/jamie.hamilton.9480/posts/461977273945834
CADDAC was thrilled to be the community sponsor of Doc Institute’s screening, “A Mind Like Mine - An Intimate Portrait of Life with Adult Attention Deficit Hyperactivity Disorder”. A film by Karen O’Donnell.
This free documentary screening and public discussion series is focused on community engagement and activism. These screenings of local docs link Torontonians to important social issues of our time.
This compelling documentary chronicles a year in the life of two adults with Attention Deficit Hyperactivity Disorder. This deeply personal film features the filmmaker's son, Kail and another young man Daniel.
Seven years after documenting their lives as children with ADD/ADHD for her film, O'Donnell turns the lens back to document their growth into young adults. Along the way however, the filmmaker is taken by surprise as she begins to suspect that she too may be living with ADD!
After the screening audience members were invited to participate in a one hour Q & A session with leading ADHD figures from a variety of fields. ADHD personality, Zoe Kessler, acted as moderator making for an always entertaining evening.
Audience members enjoyed sharing questions about the film and ADHD issues to such a distinguished group. Topics ranged from:
One woman at the event became emotional describing her challenges receiving an ADHD diagnosis. Her doctor was dismissive, leaving her quietly suffering. This raw moment demonstrated the importance of community events. Everyone should have a right to understand ADHD without the stigma.
CADDAC applauds all those involved in a fantastic evening and providing valuable information to the public. We hope to see more in the future.
If you missed the screening, you can still catch the documentary by following the link below:
http://tvo.org/video/168406/mind-mine
Event Review by Hilary Shea
Below is a recent letter written to a Globe and Mail journalist, Margaret Wente, addressing her irresponsible and poorly researched opinion piece, .
If you are so inclined you can write to her at mwente@globeandmail.com
Dear Ms. Wente,
I just read your opinion piece, Adult ADHD, a prescription for distraction, and would encourage you to actually interview an adult or two with ADHD, and a Canadian physician or two who specializes in ADHD. Unfortunately poorly researched articles and opinion pieces such as yours are harmful and highly insulting to those adults who have ADHD.
I remember a time when many people thought those with depression were just lazy, "After all," they said, "don't we all have days when we don't want to get out of bed. You just need to do it." We understand that depression is a matter of degree. Yes, we can all have a down day and yes we can all have times of distraction, but neither disorder is diagnosed unless the symptoms are at a level of impairment.
I had hoped as a society we now knew better then to judge those with mental illnesses, but for some reason media still feel that they can take pot shots at those diagnosed with ADHD. Perhaps more research into a subject, especially when it happens to be a medical disorder, and some actual Canadian content rather then rehashing other US stories might be a more responsible way to go the next time around. I would be happy to speak with you at any time should you be interested in educating yourself about ADHD.
Here are some points that you need to reconsider:
Do you have any research to back up your theory that ADHD medication are widely being used for weight lose? If not, this is irresponsible journalism and harmful to women with ADHD to spread this myth.
Interesting that you state that doctors and advocates say that unnecessarily treating ADHD is not harmful. Can you quote someone on this, because after working in the field for 20 years I have never, ever hard this statement.
You do concerned parents a great disservice by dismissing them as being "anxious", and then follow it up with a quote from another article, which has undoubtedly already been taken out of context.
You are also very insulting to physicians by implying that these medications are given out to anyone who wants to be lean, have a performance edge and do six things at once.
Heidi Bernhardt
Executive Director,
Centre for ADHD Awareness Canada
UPDATE:
An additional e-mail response to Margaret Wente after she sent the e-mail reply:
Wente: Thank you for your response. I appreciate your perspective.
A question. Does your organization receive pharmaceutical funding?
Yes, most if not all medical disorder organizations do, including those supporting patients with other mental health and physical health disorders. Although I am sure all organizations would appreciate it, support organizations receive very little or no funding from the government.
The way it works is that we put in a grant proposal, similar to the bell fund grant application, requesting funds for an educational grant, for a project that we feel would benefit our patient base. An educational grant stipulates that we have full control over the project and the content. There is no involvement from the funders.
This is stipulated in the contract. Rx&D regulations are also very stringent about this type of funding, which is a good thing. Regulations here in Canada are also very different and more stringent than the US, also a good thing. Are pharmaceutical companies heroes, of course not, they are in business to make money and you are correct that we as a society need to keep that in mind, and keep them in check, but neither are they all villains.
I am happy to answer the question, but actually even asking that questions indicated bias. Would you have asked the same question of the Mood Disorders organization, the Alzheimers association, or indeed even the cancer society. All of these disorders are increasing in numbers and are treated with medication. Depression and Alzheimers are also diagnosed in a similar way to ADHD. Do you question their existence?
Another fact to consider is that you and other journalists happily report and in so doing promote book sales of books such as "The ADHD Explosion" without actually reading the book, or researching whether the sensationalized, designed to sell, title is actually based on fact. Every time a new sensationalized title comes out journalists all jump on the bandwagon. But, try and get them interested in some well researched data and no one is interested. It seems that for some reason journalists still feel justified in taking pot shots at ADHD. It is a very complex disorder to understand, but an easy one to misrepresent.
Are there issues with over diagnosis in the US especially in certain pockets, possibly. Are some university and college students abusing ADHD medications, probably. But, instead of making unsubstantiated flippant comments about these issues and implying that we have the same issues here, would it not be better to actually do some Canadian research, look at the issues in some depth, discuss them in a balanced manner, and ask questions about why this is happening. Here is an article that is done well and that I have recommended our my blog.
http://www.nature.com/news/medication-the-smart-pill-oversell-1.14701
Poorly researched articles not backed up with legitimate up-to -date medical scientific research, just perpetuate existing misinformation and stigma and continue to harm families that struggle with the pain this disorder on a daily basis.
Heidi
There has been eight years' worth of ADHD Awareness Weeks in the United States, but none officially declared in Canada... until now! On Tuesday, October 18th, the Vancouver City Council declared the week of October 16 to 22, 2011 as “ADHD Awareness Week” at a ceremony at the Vancouver City Hall. Pete Quily (ADHD Coach) and Sarah Blyth (Vancouver politician with ADHD, ADHD spokeswoman) spoke at City Hall. Here is a video of the speeches.
