Every 20th of February, as declared by the United Nations, the world observes a day of recognition for the need of more social justice. This year’s theme is: “Closing the Inequalities Gap to Achieve Social Justice”. The UN states that “We advance social justice when we remove barriers that people face because of gender, age, race, ethnicity, religion, culture or disability.”
While ADHD is not what most would think of as our biggest issue when you consider the injustices and inequities in the world these days, it is a cause close to my heart and that of families and individuals who struggle with the consequences of this disorder on a daily basis.
We are still dealing with four major areas of inequity for those with ADHD: health, education, employment and justice and corrections. Of course, the over riding issue that continues to fuel these inequities is the lack of recognition that ADHD is a real and potentially serious mental health condition. Recent research has also shown that ADHD is also a major health risk with long-term consequences.
Lack of comprehensive access to long acting ADHD medications across Canada
Read: Equality of Access for Canadians to New Medication
Lack of assess to assessment, diagnosis and comprehensive effective psychosocial treatments
Read: Paying Attention to the Cost of ADHD: The Price Paid by Canadian Families, Governments and Society
ADHD not recognized as a serious health concern even though it reduces healthy and whole life expectancy up to 22 years
Read: ADHD: A Significant Health Risk
Students with ADHD are unable to access support for their ADHD impairments due to certain provincial special education policies and lack of educator training
Read: Inequitable Access to Education for Canadian Students with ADHD
Lack of access to post-secondary accommodations
Read: Understanding ADHD as a Disability in the Post-SecondaryEnvironment
Since this paper’s release in 2015 we have seen significant improvement in post-secondary students’ ability to access accommodations through a report from their treating physician without psychoeducation testing.
Read: Accessing Post-Secondary Accommodations When You Have ADHD – What You Need to Know
ADHD is a disability and as such can impair functioning in the workplace, however few receive accommodations in the workplace. Guidelines for screening of ADHD, or knowledge within the employment and social assistance services, do not exist.
Read: Paying Attention to the Cost of ADHD: The Price Paid by Canadian Families, Governments and Society
Incident rate of ADHD seen in the correctional population is five times that of adults in the general population and ten times greater for youth; Canadian prevalence rates of ADHD in the corrections population is 33%. Building awareness of ADHD and implementing screening and assessment procedures within the justice system would increase the chances that those with ADHD could be flagged and receive appropriate treatment. Newer ADHD treatments that significantly decrease the potential of diversion and abuse should be accessible to those with ADHD.
Read: ADHD and the Justice System
Read: Ignoring ADHD Increases Justice and Corrections Ministry Budgets
Tell us what social justice means to you as someone living with ADHD or caring for someone who does at adhdspeaks.ca
Written by Heidi Bernhardt
In the fall of 2015 CADDAC released our paper Understanding ADHD as a Disability in the Post-Secondary Environment. CADDAC wrote this paper after on-going feedback from parents and students stating that post-secondary institutions were not recognizing the right of students with ADHD to access accommodations for their impairments. Most schools were demanding that expensive psychoeducational testing be done prior to entering their institution and that data driven tests indicate functioning below average levels.
The difficulty with this is that psychoeducational tests were never designed to quantify impairments caused by ADHD; few if any of the tests accurately report on the nature of cognitive or academic impairments caused by ADHD, including those for executive functioning (EF). In fact, scoring within the average range on EF testing, while showing impairment in daily life functioning, would indicate that a student with ADHD could benefit from additional support in the academic setting. Instead, post-secondary schools were using these test results to bar students with ADHD from receiving accommodations.
Therefore, our paper states that, “If testing has been done, testing results should not be required to demonstrate below “average” functioning in anything other than attention regulation for a disability to be recognized and for the student to qualify for services and accommodations. Doing so would be discriminatory.”
This past fall I presented on transitioning to post-secondary education with Dr. Tony Rostain for CADDRA. Prior to the presentation I reviewed the documentation requirements of all fifty schools that we had reported on in 2015. I was thrilled to see that the majority now accepted reports from treating physicians as adequate documentation. Others had developed a form for these physicians to fill out, which was also acceptable.
I contacted the couple of dozen schools by phone that were will still requesting psychoeducational assessments and all but one, Ryerson, agreed to immediately change their web site to indicate that a physician’s letter describing impairments and accommodations was sufficient. Many also wanted to know more about the CADDAC Post-Secondary Report Writing Tool designed for medical health care providers and our chart of Post-Secondary Impairments/Accommodations so they could pass the links to physicians who were sending them incomplete documentation.
"Eating Disorders affect people of all genders, sexual orientations, ages, socioeconomic class, abilities, races, and ethnic backgrounds. That is why, from February 1st to 7th every year, Eating Disorder groups across Canada unite to commemorate Eating Disorder Awareness Week (EDAW) with a national week of action focused on educating the public about Eating Disorders." via NEDIC
"Research has demonstrated that individuals with ADHD have a greater risk for developing binge eating disorder or bulimia nervosa than their peers without ADHD. A study conducted at Harvard Medical School, in 2007, found that girls with ADHD were almost four times more likely to have an eating disorder than those without ADHD. Another empirical study found that 11 percent of women with ADHD, compared to 1 percent of women without, reported a history of bulimia nervosa." via ADDitude Mag.
"ADHD can often be a root problem to eating disorder behaviors, and treatment for ADHD can often help alleviate symptoms related to the eating disorder. For individuals who struggle with ADHD, food may become a way of self-medicating or exercising control in an environment that feels chaotic or out of balance.
Many eating disorder type behaviors can be misread in a person who is struggling with ADHD, and it is crucial to treat and address this primary concern in order to better deal with the eating disorder." via Eating Disorders Hope.
Due to the co-morbidity of ADHD and eating disorders we wanted to share some information and resources for Eating Disorders Awareness Week.
ADHD Linked to Eating Disorders via ADDitude Mag
"If you have ADHD, then you’re also at risk for developing an eating disorder. Find out why feelings of inadequacy may lead to issues with food, and discover how therapy or medication can help you on the road to recovery."
ADHD as a Co-Occurring Disorder with Eating Disorders via Eating Disorders Hope
"Attention Deficit Hyperactivity Disorder (ADHD) is a condition that both children and adults can struggle with. While many individuals’ associate apparent symptoms with this disorder, such as restlessness, inability to concentrate or hold attention, or impulsiveness, there is rarely a connection made to eating disorders. However, research has demonstrated several commonalities between ADHD and eating disorders, which can help bring a greater understanding to the potential connection between these two conditions."
ADHD and Eating Disorders: What You Need to Know via Understood
" If your child has ADHD and also has an eating disorder, you may think the two are unrelated. But these two conditions often co-occur. Research shows a particularly strong link between ADHD and binge eating."
If you or someone you know if struggling with an eating disorder, there is help. Here are a few resources. If you have more that you would like us to add to this list, please email us at communications@caddac.ca.
NEDIC provides information, resources, referrals and support to Canadians affected by eating disorders. They also have an Instant Chat option. nedic.ca
NIED is the voice for Canadian families, caregivers, and individuals who are affected by Eating Disorders and other co-morbid and concurrent diagnoses. nied.ca
Eating Disorders Nova Scotia (EDNS) is a community based organization that offers peer support for individuals with eating disorders, and for their families, friends and partners. eatingdisordersns.ca
Body Braves mission is to deliver innovative local and national services that address the major gaps in resources for eating disorders, in collaboration with those with lived experience and our community partners. Body Brave also works to create a bold national recovery-focused, inclusive community, committed to body liberation as well as raising awareness and reducing stigma around disordered eating and/or eating disorders. bodybrave.ca.
The Bulimia Anorexia Nervosa Association (BANA) is a not-for-profit, registered charity, community-based organization servicing Windsor-Essex County in Ontario, Canada. Since 1983, BANA has been committed to the provision of specialized treatment, education and support services for individuals affected directly and indirectly by eating disorders. bana.ca
On January the 29th CADDAC was notified by Patrick Dicerni, the Assistant Deputy Minister and Executive Officer of the Drugs and Devices Division at the Ministry of Health and Long-Term Care, that Ontario will publicly reimburse INTUNIV XR® (guanfacine hydrochloride extended-release tablets) for the treatment of attention deficit/hyperactivity disorder (ADHD) symptoms in children and adolescents (6 to 17 years old). The medication has been approved as an adjunctive (add on) therapy to stimulant medication and as a stand-alone treatment for those who have significant intolerance to stimulant medication or have had an inadequate response to either atomoxetine or other non-stimulant medications.
CADDAC has advocated for this coverage for some time now and would like to applaud the Ontario government for granting families access to an additional treatment option to help their children manage their ADHD.
Updates on the status of new drug products funded by the ODB program can be found in the Ontario Drug Benefit Formulary on the ministry’s website at: http://www.health.gov.on.ca/en/pro/programs/drugs/edition_43.aspx
A media release from Takeda can be accessed Here
Written by Heidi Bernhardt
Bell Let's Talk is on Wednesday January 29th.
When I first heard this year’s Bell Let’s Talk theme, Mental Health: Every Action Counts, my immediate reaction was, yes let’s actively start to include ADHD in the discussion! Those in the ADHD community have been wondering why ADHD seems to have been ignored in yet another mental health campaign. After ten years, it’s time for us to include ADHD in this campaign!
The Canadian Mental Health Association has no information on ADHD on their site. Out of 32 information brochures, on at least 12 different mental health conditions, not one is on ADHD. The Centre for Addiction and Mental Health has no adult ADHD clinic and does not see adults with ADHD unless they have a mood disorder. Most government mental health initiatives or committees do not list ADHD in their mandate and I just attended the Rotman conference on mental health and ADHD was not mentioned once.
Did you know that...
Yet, how can we expect the public to recognize ADHD as a significant health risk as Dr. Barkley demonstrates, if our leaders in mental health do not openly recognize ADHD as a mental health condition?
I’m still shocked at some of the stupid statements about ADHD, that come out of the mouths of people that I consider good, caring, intelligent people. Their lack of knowledge can be forgiven. Their judgement and unsolicited advice on a medical condition that they know little about, can’t.
So how do we change this? We include ADHD in this year’s Bell Let's Talk campaign.
Bell Let's Talk is asking people to talk about mental health, listen and ask questions and to educate themselves.
So, do all of that, but focus on ADHD.
#ADHDSpeaks helps us to elevate the voices and experiences of people from ADHD communities. We asked what you wished your extended family knew about having ADHD and here is what you said.
"I love you. If I said…wait, I am sure I have said something offensive, and for that, I am sorry. It never came out of a place of mean, but a place of the mouth and brain not being on the same page. ❤️
I am sorry I didn't return the call or message, send the thank you note. It probably was written to do on a lost list, or made out in an envelope but never made it to the mailbox.
I appreciate your time, UNDERSTANDING, and love so much."
Tracey
"How real the stress is of raising a child that is neurodivergent! On the outside they seem very normal and people on the outside looking in do not realize how difficult and stressful it can be in our lives."
Erinka
"That being quiet doesn’t mean she’s rude or uninterested. It’s just taking all her energy to just focus and behave. Speaking to you is impossible until all the noise in her head slows down. Give it time... then once she’s ready to move and talk, don’t get mad and tell her to stop. How confusing is that?!?"
Joanne
"When I am made aware of your own feelings of dissatisfaction, disappointment, irritation or other displeasure regarding my daughters behaviour our my own or lack of acting out the expected “appropriate” cues and customs (writing a letter to my grandmother, calling on someone’s birthday or other executive functioning required tasks) then I feel an overwhelming deflation feeling. A mixture of guilt, shame, self-loathing. It goes deep and immobilizes me from trying to be the way you want me to be. In my daughter. It activates her into more hyperactive arousal states. Please just try to be along side us . The judgement hurts so much."
Becky
"It's real, just because you read somewhere that it is over diagnosed doesn't mean I and the children don't have it. I have done my own research and spent countless hours with the pediatrician working on getting the right amount of the right medication and yes, we even talk about diet."
Megan
"That I want you to visit and I want to enjoy your company. But I’m not good at being spontaneous, I get over stimulated quickly and I need to keep clutter to a minimum so I can relax. Poking fun at me makes me feel rejected and hurts much more deeply than its meant."
Jeni
"It’s real yet invisible.✨It’s often accompanied by other mental health diagnoses that add layers to the struggle.✨Everyone experiences ADHD in different ways. ✨Everyone needs different treatment. ✨As someone with ADHD: sometimes my filter doesn’t work, I’m sorry. ♀️As a mom of kids with ADHD: I’m exhausted and need support, not judgment. ♀️"
@kelownamarketing
"The walls of my house have no pictures because when I come home from work I need a calming environment. Please stop sending photos and pictures and asking me why they are not up."
@jkach77
"That when I set boundaries about my time and attention, this is a survival & thriving strategy for me, and not a rejection of you. For example, if I need the morning to finish something, you can let me know something if it comes up, but I am not available for conversation."
@matt.fillmore
"That it’s not always something you can fix by an earlier bedtime, consequences, or enrolling them in “more” to burn out that energy. Every child is unique. This is something I wish everyone in the works knew. My family is pretty amazing. ❤️"
@crislovesmonkeys
Can you relate? Do you have tips of your own? Make a submission at www.adhdspeaks.ca
#ADHDSpeaks helps us to elevate the voices and experiences of people from ADHD communities. This month, we're asking you holiday themed questions about getting through one of the busiest times of the year!
Here were your responses.
My son does better when we host family get togethers, that way he can escape to his room when he gets overwhelmed. He does not do well at other people’s houses for big events. I make sure all his basic needs are met and tell him what to expect next. He’s eleven and needs to know when we are eating, what we are eating and everything else in between. When he’s over stimulated he has the option to look on my phone or tablet quietly in a separate room. This took me a long time to realize, which resulted in leaving weddings early, leaving in the middle of Thanksgiving dinner, and having to cancel plans. Now I know he needs space and a schedule of events.
Kelly, Facebook
It’s hard. I get very overwhelmed visiting family especially since most of them don’t know how to handle someone with adhd. On top of adhd I also have severe anxiety so the holidays get real tough for me. Music works as a good outlet for me but I always forget my headphones. So I try to limit my time within big groups. I’ll leave the room, go outside something to ground myself.
Helen, Facebook
EVERTHING is overwhelming. I’m the mum, so I make the magic of Christmas happen. ⭐️
Cynthia, Facebook
But every year, I find it hard. Planning gifts, planning food, clothes, cards, making sure everyone has what they need (including pets). My ADHD makes All planning a Big Challenge. Thx to Excel & post it, and LOTS of coffee, I manage (I do the best I can)... but my kids know, sometimes I find hidden gift, all the way until Easter!!
Balancing the more active, and social activities with quieter, more restful ones.
nicolemariassh, Instagram
Planned ahead for Black Friday with a list and a budget! I now have almost all of my Christmas shopping done and I know how much I’ve spent. Most importantly, it gave me time to find quality gifts for friends and family that have meaning to them. I didn’t just spend money because I had to.
attention.dd, Instagram
Can you relate? Do you have tips of your own? Make a submission at www.adhdspeaks.ca
If you seen articles on a recent study about Omega 3 supplements and ADHD please be aware that some of the reporting is rather misleading. This study was a twelve week study of 92 children and teens with ADHD between the ages of 6 and 18 who were given high doses of the omega-3 fatty acid eicosapentaenoic acid (EPA) or a placebo.
Many of the articles, which were obviously spun off the researcher’s media release, included statements such as:
“Omega-3 fish oil supplements can improve attention in children with attention deficit hyperactivity disorder (ADHD) just as much as drug treatments, but only in those whose blood levels of omega-3 are low, trial results showed on Wednesday.” [i]
“The results showed that of the participants who received the supplement, those who had the lowest levels of EPA in their blood showed improved focused attention and vigilance. “ [ii]
“Our results suggest that fish oil supplements are at least as effective as conventional pharmacological treatments among those children with ADHD who have omega-3 deficiency,” said Dr Jane Chang, co-lead researcher at King’s College London.[iii]
I read these articles with great interest since at CADDAC we frequently receive calls from parents asking about Omega 3 supplements as a treatment for ADHD and it has been a while since any significant research findings have been reported. But, while reading the various articles that popped up in my Goggle Alerts, alarm bells started ringing in my head. The quotes seemed to be an overstatement of the findings. This can occur when a researcher is eager to promote their research findings, whether significant or not. It is then compounded by media who do not have the expertise to question the research methodology or results, but simply regurgitate the media release.
This is of great interest to me because I frequently have these type of research claims quoted to me by those with little expertise in the field of ADHD or by those with an agenda to discredit ADHD. Or, others may be interested in promoting a treatment that is not backed by good, peer reviewed, large scale, duplicatable research. So, I did some more digging and came across two excellent articles that told a more complete storey about the research methodology and how the quoted research findings were obtained.
The fist article Here's The Real Truth About Treating ADHD With Omega-3 Fish Oil Pills does an excellent job at summing up past research.
It also helped to put the study’s claims into perspective by including a statement by the authors admitting that more research is definitely required before these supplements can be recommended as a treatment for ADHD.
However, there is an even more interesting article, Despite Claims, EPA Supplement Does Not Improve ADHD Symptoms in Youth which looks at the complex and questionable process the researchers used to find the results they were looking for.
I will share a few of the highlights of the researchers’ process outlined in this article, but I strongly suggest that you read the article in its entirety if you are interested in learning about how ADHD research can be manipulated and then spun in the media.
Apparently after finding little difference between the placebo and the Omega supplement treatment group’s functioning, except for one showing a benefit for the placebo treatment, the researchers started to break down the results into subscales. The author of this article, Peter Simons points out that this could be considered over-testing to create the desired outcomes the researchers were looking for since none of these tests were included in the initial study design.
Out of the 34 subscale tests that were analyzed two tests favoured the placebo and one test favoured the EPA supplement. The other 31 tests showed no difference between EPA and placebo.
I strongly suggest that you read Mr. Simon’s entire article if you are interested in the further sub scaling of tests and possible flaws in the research analysis, but at the end of a very long convoluted process the researchers found something they could use.
At the end of his article Peter Simon shows us how the researchers were able to come up with their media statements. The researchers broke the subjects into those with lower and higher pre-existing EPA levels. There was no explanation as to what normal levels for children at a certain age would be and if the children in each group varied in age, but the researchers found that when grouped into EPA levels:
These results hardly seem to warrant the quote, “"Our study sets an important precedent for other nutritional interventions, and we can start bringing the benefits of 'personalized psychiatry' to children with ADHD." By Professor Carmine M. Pariante.
I took the time to really look into this study for two reasons, my own curiosity and to better inform our stakeholders. However, I chose to write about it because this type of misleading reporting by both the researchers and the media causes great harm to the ADHD community and the validity of ADHD research in general.
Heidi Bernhardt
[i] https://www.thechronicleherald.ca/news/world/omega-3-oils-boost-attention-as-much-as-adhd-drugs-in-some-children-378192/
[ii] https://www.medicalnewstoday.com/articles/327083.php#1
[iii] https://www.sciencefocus.com/news/omega-3-fish-oil-can-reduce-adhd-symptoms/
Written by Emily G., Grade 6 Public Speaking Unit
Why is her locker so messy?
Why does he always interrupt the teacher?
She forgot her gym clothes at home again?
Why does she get to use a calculator on the math test and I can’t?
Why is she always doodling on her classwork?
The examples I just gave are some of the characteristics found in people with ADHD and I am one of them. ADHD is a medical disorder. I am going to talk about what that means, what it’s like for me to live with ADHD and some of the ways to help people manage their ADHD.
To begin with, ADHD stands for Attention Deficit Hyperactivity Disorder. ADHD is usually divided into three types: inattentive-distractible type, hyperactive-impulsive type and combined type. I have been diagnosed with the combined type. Some of the symptoms you would see in someone with inattentive ADHD would be not giving attention to details in schoolwork, difficulty listening even when being spoken to directly, avoiding tasks that are going to be mentally difficult, losing things easily and being forgetful. Common symptoms of hyperactive-impulsive ADHD are fidgeting, squirming or getting up from your seat when you aren’t supposed to, difficulty staying quiet or interrupting, talking excessively, blurting out answers or difficulty waiting for a turn.
Next, ADHD can affect everybody differently. For those of you who know me well, outside of the classroom, I can be extremely talkative. I get very distracted in class by all sorts of things that are happening around me such as someone making noises, daydreaming or doodling on my papers. I work very hard to concentrate in school and by the end of the day, my brain is very tired and I have a hard time focusing on getting my homework done. This often causes my mom to get frustrated with me. When it comes to doing my work, sometimes it is hard and gets overwhelming because I have trouble getting started and organizing my thoughts. In addition, I have a hard time falling asleep at night because my brain is always “on” so I often lie in my bed drawing in my notebook until I get tired. I often get sidetracked, especially when I don’t want to do the main task in front of me. I know that is common for all kids, but it is really hard for me to get back to my work because I forget things easily. I get most frustrated when I work really hard for a test but still don’t get a good mark on it.
Finally, it is usually a parent or a teacher who will suspect a child has ADHD. For me, when I was six years old, I was working with a language therapist on my reading and she noticed how I was avoiding doing the work with her and I was easily distracted. So I went to see a doctor who specializes in ADHD and I was diagnosed. I see my doctor every month and she prescribes me medication which I take every day. It really helps me focus while I am in school. There are many different types of medications to help ADHD, but there is no cure for ADHD. I get help in school from the CDL department and I have an IEP so my teachers know how to help me in a way that is best for me. This includes using voice to text technology because it is sometimes hard for me to write down all of the things I am thinking. I also get to use aids that help me with things that are hard to remember and extra time or reduced questions on tests.
To conclude, living with ADHD is pretty much all I have ever known and I actually really love having it because it is a special part of my identity. ADHD can be different for everyone. While I am easily distracted, very talkative and have trouble focusing, I am lucky that I have a great support system in my family, my teachers, my doctor and my friends. I view my ADHD in a positive way because I know it isn’t a bad thing and it actually helps me see the world a little differently. I hope I have given you some information to view ADHD and those who have it a little differently too.
Thursday October 10th is World Mental Health Day. Which means that it is a great time to remind everyone that ADHD is considered a mental health condition.
ADHD is medically categorized as a neurodevelopmental disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM). Autism and Learning Disabilities are also included in this category. In 2013, when the DSM 5 was published, ADHD was moved to the neurodevelopmental category from the behaviour category. I was personally thrilled along with many ADHD experts. Why? Because we all hoped that perhaps now those who incorrectly thought of ADHD as just “bad behaviour” would start to re-conceptualize ADHD as the “real” mental health condition that it is.
It can result in relatively mild to significantly severe impairments. However, when left unrecognized and untreated it can impact many areas of someone’s life. Indeed, new research has indicated that not treating ADHD costs our Canadian economy more than thirty billion dollars annually, on par with depression. Recent data from Dr. Barkley’s 2018 study indicated a greater than nine-year reduction in life expectancy for children with ADHD, and a nearly 13-year reduction if the disorder persists to age 27. This is 2.5 times greater than the top four risk factors that we focus on as a society combined, obesity, alcohol use, smoking, and coronary heart disease.
Has there been increased recognition of ADHD as a mental health disorder since 2013? Some perhaps. But I must admit that there is still a very long way to go. The largest mental health facility in Canada has few resources for ADHD. And we rarely, if ever, hear about ADHD from any of the large mental health organizations or national mental health awareness campaigns.
While I certainly understand the reluctance of some to label ADHD a mental health condition, having my own close family members with ADHD, if we hope to gain recognition of ADHD as a disorder that can impair daily life functioning and impact our economy we need to stop being squeamish about these labels.
October is ADHD Awareness Month.
ADHD Speaks is CADDAC’s campaign to get people talking about ADHD. For this year’s Awareness Month CADDAC had developed several tools to help you speak out about ADHD.
Go to ADHD Speaks to find out how you can help build awareness of ADHD in a few easy steps.
