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Written by Heidi Bernhardt R.N.

During this year’s ADHD Awareness Month’s Campaign CADDAC shared ADHD facts from peer reviewed research. Our media release and bus shelter posters stated that ADHD is a serious mental health disorder that can significantly impact one’s mental health as well as physical health. Consequently, a few followers shared that they found the messages too negative. They would have preferred more positive messaging, fun facts about ADHD and more comments on individuality and neurodiversity. As a mother, grandmother and spouse of someone with ADHD I can certainly understand these feelings. We want others to recognize the individuality, strengths and other wonderful traits of our kids and family members with ADHD and not just the down side.

One of our Facebook contributors suggested that it would be beneficial for CADDAC to let people know why we think people should know these facts and what CADDAC’s next steps are after this campaign and bus shelter advertisement. I though these were very insightful questions that should have been addressed earlier, so here goes. 

Unfortunately, medical research data by its very nature always removes individuality. It looks for commonality, raw data and percentages that can be used to draw conclusions. I remember when I first found out that ADHD was a part of our family, about thirty years ago, I read medical texts written for clinicians because little else was available. Even with a background in psychiatric nursing I found these extremely depressing. Most of the research data made it sound like my child was heading for a life of failure, unfortunately that has not changed much. After working closely with ADHD experts through CADDRA while building CADDAC I quickly realized that ADHD information, even if basically the same, should most often be nuanced according to the audience.

But here’s the rub. If we don’t share the negative facts about ADHD openly and bluntly, ADHD will never be recognized as something that requires society’s attention. We still lack resources for assessment and treatment nation wide. Access to multimodal treatments, even when strongly backed by research, are costly and difficult to access. Many students with ADHD across Canada are still unable to access the supports they deserve in order to reach their potential. Employers still do not understand that ADHD is actually a medical disability and similar to depression should allow the right to accommodations.

We at CADDAC also find it hugely concerning that: large mental health organizations still offer very little information about ADHD; many mental health centres still do not treat ADHD; many medical professionals still know little about ADHD and those that do often charge over provincial coverage to diagnose it; and large mental health awareness campaigns still do not include ADHD in their messaging. 

Almost on a daily basis CADDAC is reminded that our decision makers and elected officials do not understand the serious consequences of ignoring ADHD. They really don’t think about ADHD at all because they believe that ADHD is of no interest to their constituents. You see, their constituents do not speak to them about ADHD unlike parents of children with Autism. 

So, this year CADDAC chose to put out some hard facts about ADHD. Through our ADHD Speaks campaign this October, ADHD Awareness Month, we are asking that people share those hard facts with their elected officials or others that needed to be educated on ADHD.  

We ask you, our followers, to stay tuned as we further expand our online advocacy campaigns this fall and into 2021. We plan to highlight specific advocacy asks in each campaign and will be requesting those personally or professionally impacted by ADHD to help us inform our elected officials that their constituents actually do care about ADHD.

Warm Regards,

Heidi Bernhardt

I read the Toronto Star article, Group worries kids with other disabilities forgotten amid autism crisis with much interest and I must say also some frustration. The below information was sent to

I wholeheartedly agree that many children with disabilities are being left out of this discussion while at the same time I applaud the parents of children with Autism for making their voices heard. We are still working at getting more parents of children with ADHD to speak out about the continued lack of recognition ADHD received in Ontario schools. Thankfully we now have some parents who are willing to speak out, but many parents unfortunately are still affected by the myths, stigma and judgment that surrounds ADHD. Hence out latest ADHD Speaks Campaign

The issues that are front and centre in the media at this time are some of the issues that we have also been discussing with Ontario Ministries of Education for almost two decades.  Similar to students with Autism many students with ADHD are being excluded from a full day of education in our Ontario school boards. ADHD is the most common neurodevelopmental disorder seen in children world wide, with incident rates at least double or triple that of Autism. And while some students with Autism can be severely impaired, students with a severe case of ADHD are more impaired than a student with mild Autism. The two disorders also frequently co-occur in the same child.

Although many of the learning and self-regulation impairments that students with ADHD experience are very similar to those of students with Autism, ADHD is not included in any of categories of exceptionality that the Ontario Ministry of Education uses to categorize stud nest with special leaning needs. This has resulted in many school boards using this as an excuse to not IPRC students with ADHD leading to inadequate resources for students with ADHD. The situation is so bad that physicians report that parents are coming to them asking for a diagnosis of Autism rather than ADHD, because they know that this will get their child access to some learning resources.that these kids desperately need. Of course this is not a discretionary choice on a physician's part, but how sad that it has come to this.

One of our major asks of the Ontario government's Ministry of Education is that ADHD be included in the categories of exceptionality. Since learning disabilities, Autism and ADHD are all neurodevelopmental disorders that impair learning, it would only make sense to group these disorders together in one category.

While on The Agenda, prior to the election, this was a promise made by Christine Elliott. Please access this link to view the interview, https://www.tvo.org//video/programs/the-agenda-with-steve-paikin/promises-for-special-education. This segment followed an interview on the Agenda with CADDAC.

In addition, because ADHD is not included in a category of exceptionally many teachers do not view ADHD as a serious learning risk, when we have abundant research that clearly indicates that it is. We see 8-10% lower scores in literacy and numeracy for these students and far higher drop out rates, even though most are smart enough to go on to post-secondary education. Educators are also not receiving adequate training on classroom teaching strategies and accommodations that are beneficial to all students but essential to those with ADHD.

We have released several policy papers on ADHD and education over the years. Here is or latest paper, https://caddac.ca/adhd/wp-content/uploads/2017/10/Education-Policy-Paper-FINAL.pdf

Join the discussion about this post on our Facebook page , or become involved in our ADHD Speaks Campaign.

Heidi Bernhardt

 

 

 

 

 

 

 

https://www.thestar.com/news/gta/2019/03/14/group-worries-kids-with-other-disabilities-forgotten-amid-autism-crisis.html

  CADDAC encourages BC residents who are concerned about this issue to contact their MLA. 

Up-coming proposed changes to the special education funding model in BC, away from a model of designation to a prevalence based, inclusion, model may benefit students with ADHD or cause continued inequities.  Much will depend on the recognition of these vulnerable students’ needs moving forward.

Background

In the fall of 2016 the new BC Special Education Guidelines draft was shared with CADDAC.  We were encouraged to see that ADHD was to be added under the category of Learning Disabilities. CADDAC was then informed in the spring of 2017 that students with ADHD were to be recognized in a stand-alone category. Either option was acceptable to CADDAC. Although these categories would not be tied to additional funding, it would at least be a step forward in recognizing  that these students have a disability, causing impairments, resulting in serious learning risks.

However, with the change in government everything was put on hold. During a meeting with Minister Fleming on December 4th 2017 CADDAC, as reported in a previous blog, was assured by the Minister that the Ministry was not considering changes to these guidelines and that ADHD would not be removed as a category.

Current Situation

After an e-mail exchange requesting clarification on changes to the funding model at the end of 2018 a meeting occurred on January the 30th with Kim Horn, the Executive Director, Sector Resourcing & Service Delivery of the Ministry of Education. During this meeting CADDAC learned that due to the proposed changes to a prevalence funding model, the fate of all designation categories and the new Special Education Guidelines is unknown. Unfortunately the move away from the use of designation categories and these guidelines could also mean that the clear message that ADHD was a disorder that warranted additional supports and resources for students to be able to meet their potential as learners might be lost, again leaving these student’s needs unrecognized and under serviced.

Since students with ADHD were inadequately recognized and serviced in past funding and designation models, extra care must be taken during this transition to ensure that these students be better understood and recognised as students with special learning needs.

CADDAC shared our concerns during the call and were invited to submit a paper outlining our concerns and recommendation to the Implementation Coordination Committee of the K12 Funding Review Committee.

Access CADDAC's submission Here

CADDAC’s ASK to the Ministry of BC Education

CADDAC requests that in the process of moving forward with the prevalence based funding model and the inclusion system of special education the BC Ministry of Education ensure that students with ADHD will receive equitable access to education by:

  1. Officially stating that students with ADHD are to be recognized as students with a disability resulting in learning and self-regulation impairments and by providing examples of diverse ways these students can express these special learning needs.
  2. Providing and encouraging education for educators on ADHD learning and self-regulation impairments, appropriate classroom accommodations and teaching strategies.
  3. Ensuring that sufficient funding for additional resources is provided to support an inclusive classroom model.
  4. Holding boards accountable for providing additional resources to classrooms with a heavy load of special needs learners.
  5. Truly holding boards accountable for meeting these students’ needs.
  6. Holding boards accountable that the funding they receive for special education is actually spent on special education.

Summary

With the implementation of changes to the funding and education system the BC the Ministry of Education is in a position to put policies in place that will ensure that students with ADHD receive equitable access to education and have the right to reach their academic potential.

If you have questions or would like to discuss any of these issues or suggestions please contact Heidi Bernhardt at heidi.bernhardt@caddac.ca.

I read the Globe and Mail articles on Educating Grayson and Advocates for students with disabilities call on Ontario to stop school exclusions with great interest. CBC's "Metro Morning" also hosted an interview with a mother of a student with Autistism who had been excluded and the reply by a school principal.

The families that we represent have been contacting us for the many years to express their frustration and anxiety over this very issue. Many students with neurodevelopmental and mental health disorders, including ADHD the most prevalent, who express their symptoms and impairments in ways that schools find challenging (usually what is labelled as behavioural) are being asked to attend school for less hours than their peers. Students with ADHD in Ontario have the additional challenge of not even being officially recognized as students with a disability and exceptional needs, unlike students with Autism, although many of the impairments are very similar.

Understandably students with these exceptional needs can be a challenge for schools, but it is often made more challenging by a lack of understanding about the disorders, lack of educator training on how to work with these children, lack of support, resources and unfortunately sometimes also the false belief that the behaviour of these students is a choice, rather than a result of a disability. What I and many parents have found makes the greatest difference are educators, teachers and principals, who "get it". In other words, have training and insight, work with the families to figure out strategies and accommodations, and try to understand the student and their special needs, rather than being judgmental and punitive.

Many years ago when the Ministry of Education and the boards began speaking about inclusion and integrating children with exceptional needs into main stream classrooms, an advocate that we worked with, cautioned that inclusion without additional resources and support for educators and students alike was just a form of dumping students into the main stream - a recipe for disaster. For the past several years we have been seeing the result of this very process.

Over the many years that I have been working in this field I have seen many reports by Ministries and school boards on "education and learning for all". When asked for my opinion, my comment would be that it was a very pretty document often backed by good intentions, but without the implementation of more education and training for educators coupled with more resources and support it is just a pipe dream.

Similar comments have been sent to both Metro Morning and the Globe and Mail.

Heidi Bernhardt

Note from Heidi Bernhardt, CADDAC President

I am sharing this incident with you because the CADDAC board and I personally continue to be concerned about how information on ADHD is sometimes presented in the media. Unfortunately, poor, even if well-meaning, studies and their questionable findings are being reported, using by-lines meant to be eye catching and memorable. I understand that a reporter may feel that they are only regurgitating what a researcher puts out there, but when they report on an ADHD study that they are not qualified to evaluate and do not reach out to those who are, misinformation on ADHD just keeps increasing. And using headlines and personal stories to sensationalize and misinform just makes it worse. This harms families who are already stigmatized by all the misunderstanding and myths that continue to abound about ADHD. CADDAC and CADDRA are sometimes contacted by journalists seeking out ADHD experts to evaluate and comment on a new study prior to reporting on it. This is how it should be done.

I would be very interested in hearing your comments on this topic. You can send your comments to me at resources@caddac.ca

 Huffington Post Article

On December the 7th the Huffington Post published an article titled, Mom's Postpartum Depression Linked To ADHD In Kids, Australian Study Finds ‘Parenting hostility' is connected to a child's eventual diagnosis or symptoms”. This was first brought to my attention on December the 8th when I was copied on a letter sent to the Huffington Post by a psychologist and contacted by a second psychologist concerned about the messages in this article.

In her complaint to the Huffington Post the psychologist stated that the by-line was,

incredibly damaging to parents who are parenting children with “invisible disabilities,” especially ADHD, which has already been so heavily stigmatized in the media.”

She went on to add that the byline

“… makes the results appear causal, when they are not, but it is also entirely misleading. Only several paragraphs in do you finally get to the critical point made by the researchers: “We suspect that children's challenging behaviour early in life may be connected to mother's postnatal mental health." Why not lead with that critical information? Why not avoid contributing to the vast amount of misinformation and misunderstanding that is already making it so painful for families of children with this neurodevelopmental disability?”

Although the article was edited and the title and by-line changed to “Study On Postpartum Depression And ADHD Stresses Need For Maternal Health Support, Moms shouldn't blame themselves, researchers say” by the Huffington Post within hours after receiving the complaint, I and others remain concerned about this article. The article you now see on the Huffington post if not the original article.

Here is a comment by a parent that was sent to the Huffington Post that I was copied on.

“I see that there are some areas of the article which state that mothers should not be made to feel blamed for their child's ADHD, and that a child's ADHD may contribute to depression in the parent. However, the title of the article, certain statements within it, and the direct quotes from Melissa Doody, paint an entirely different picture. These imply that depression in the mother CAN indeed cause ADHD in a child. Anyone who skims through your headlines or through this article will come away with that message…I feel sorry for Melissa Doody, since she clearly believes that she is responsible for her child's ADHD, when she is absolutely not. Spreading her self-deprecating statements around is not helpful, and is simply irresponsible.”

When I personally contacted the author of the article it was suggested to me that there was no problem with the reporting but that rather I and the psychologist who complained simply did not like the information the study highlighted. To test this theory I reached out to some other medical professionals to get their impression of this article. Several pointed out that they had significant concerns about this article and the messages it was sending. One physician stated that articles like this made her blood boil. Several mentioned the fact that fathers had been completely left out of the equation and that this was another case of blaming the mother for the child’s problems.

I consider this another version of the ‘Blame the mother syndromes’ that were taught to me in med school.  I could argue quite passionately that the dysregulated infant who will later in childhood be diagnosed with ADHD is in fact the cause of the mother's postnatal depression.”

And

“However, this also brings me to my other major concern with both the article and the study itself: it is hideously gendered, and contributes to further mother-blaming in the world of mental health. There is no mention of fathers at all, and yet "parenting" is the term used, where what they're really looking at is ‘mothering.’"

Upon examining the actual study professionals commented that,

“…critical confounding variables are unaccounted for (i.e. most notably, the genetic links between ADHD, anxiety, and mood disorders), are all weak, at best.”

And

“Also important is to note that they did not control for cigarette or alcohol use during pregnancy or pre or perinatal birth complications when exploring the association between maternal post natal mental health and offspring symptoms of ADHD.”

A few other issues with the study were noted; children were not necessarily diagnosed with ADHD but rather reported to have ADHD by their parents; depression was not evaluated as to whether it was an on-going depression or a postpartum depression; mothers were not screened for ADHD.

I received other comments questioning the validity of this study’s finding and expect to receive more in the future, but since I am still receiving correspondence on this article from concerned parents and professionals I felt that it was important to comment on it sooner rather than later.

If necessary, I will write a follow-up on the actual study itself once it has been further analyzed.

Again, please feel free to let me know what you feel about this issue at resources@caddac.ca

Heidi Bernhardt

We get it! Sharing a video of yourself talking about ADHD on ADHD Speaks is scary!

Many parents who talk to us at length, sharing their frustrations and heartaches, are afraid to speak out about ADHD in public.  They have let us know that while they would love to share their stories online they are concerned about their child who just wants to stay under the radar. This is totally understandable. Kids with ADHD get centered out far too often and not for their successes – most often just because they have ADHD. So who would want to make their child the poster child for ADHD.

We have a solution!

Be as creative as you like! We want your stories anyway you want to share them!

The long term goal is that eventually everyone will feel comfortable talking about ADHD, but as parents and grandparents of kids with ADHD and adults with ADHD we understand that speaking up about ADHD is scary.

"ADHD Speaks" is a marathon and not a sprint. CADDAC understands that it will take time to make this happen and we want to let you know that we are in this for the long haul.

CADDAC is committed to changing the understanding and perception of ADHD.

We hope you’ll join us on this journey in any way that makes you feel comfortable!

 

Canadian celebrities Patrick McKenna, Tazz Norris, Rick Green, Simon Rakoff, and Zoe Kessler all have adult ADHD. They have all sent in their personal thoughts on ADHD by sharing their selfie videos with CADDAC. Just like you can!

These videos are being shared on CADDAC’s social networks throughout October, ADHD Awareness Month. Additional videos will be added over the up-coming months as they come in.

Check out the videos on CADDAC’s YouTube Channel.

Why we also need to hear your voice on ADHD

When adults with ADHD and parents of kids with ADHD get together it is actually difficult to get them to stop talking about their experiences. They freely voice their frustration with the continued lack of understanding of ADHD by non-ADHDers along with the overabundance of judgment and unsolicited advice they receive from those who know nothing about ADHD. Imagine someone telling a parent of a child with any other type of medical disorder that they should ignore the advice of medical experts, the consensus of medical associations across the world and decades of research, and trust their uneducated advice.

So while we at CADDAC hear all about your experiences, thoughts, frustrations  and heartaches, the rest of the world, the government representatives and decision makers, the media and public and all those ill-informed optioned people are not being informed by your life experiences.

They need to hear about ADHD’s impact on your lives; what caring committed parents you are; what great employees you are, or could be with a few accommodations. They need to hear about the lack of resources for ADHD, that it is a life long struggle and how hurtful their misplaced judgment really is.

Things won’t change unless everyone speaks up about ADHD!

Join the ADHD Speaks movement. Send in your video and audio recordings along with your written stories. Write or call your elected officials and tell them you do care about ADHD and want to see change happen.

Go to www.caddac.ca to see how you can help.

 

Patrick McKenna is on a mission to get the word out about ADHD: “People question the validity of ADHD because they can’t see the problem. If only those with ADHD could wear a bandage on their head 24/7 maybe people would not be so dismissive of ADHD symptoms which can cause a great deal of pain.” Rick Green, of TotallyADD, addresses it on a more personal level, “When I received my diagnosis at the age of 47 it explained so much. I finally understood why some things were so easy for me to accomplish and others were impossible to complete, no matter how much effort I put into it. It changed my life and the way I look at myself.”

In addition to taking the lead in reaching out to other comedians for this campaign, Patrick McKenna will be starring in “Is it Me or the ADHD?” along with the Improv group "Two Men & a Lady, during CADDAC’s Live show, “Living With ADHD, A Funny Yet Serious Look At Having ADHD” occurring on the Saturday night of CADDAC’s 10th Annual ADHD Conference, taking place this October 27th and 28th in Halifax, NS. The conference is geared to parents of children with ADHD, adults with ADHD and their families, educators, and the medical community.

10th Annual ADHD Conference

October 27 & 28, Saint Mary’s University, 923 Robie Street Halifax NS B3H 3C3
https://caddac.ca/adhd/events/3531/1540630800/1540742400/
Speaker Biographies: https://caddac.ca/adhd/wp-content/uploads/2018/07/Bios-final.pdf

Living With ADHD, A Funny Yet Serious Look At Having ADHD

This is a show for all ages, with couple and family discounted ticket rates

Is it Me or the ADHD? Starring Patrick McKenna and the Improv Group - "Two Men & a Lady
McNally Theatre, Saint Mary’s University, 923 Robie Street, Halifax, NS, B3H 3C3
Oct 27th, 2018, 7:30pm
https://caddac.ca/adhd/events/living-with-adhd/

Patrick McKenna and Other Canadian Celebrities Speak out About ADHD and Invite the Public to Join the Conversation #ADHD Speaks

On October 2nd 2018 CADDAC, the Center for ADHD Awareness Canada, launched “ADHD Speaks” a multiyear national campaign to get people talking and break the silence on ADHD.  People all across the country are invited to submit selfie videos and use the campaign hashtag, #ADHDspeaks, to join the conversation.

CADDAC’s hope is that the creation of the ADHD Speaks movement will finally provide a platform for those living with ADHD to have their voices heard. Canadians impacted by ADHD are still afraid to open up about this condition. CADDAC believes that there is still so much misinformation and judgment out there about ADHD that just continues to fuel the existing stigma. This has caused individuals and families to feel shame and remain fearful about sharing their struggles and experiences. This lack of discussion about ADHD has led our politicians and decision makers to conclude that their constituents and stakeholders don’t care about ADHD; that they don’t care about the lack of resources and serious consequences that occur when ADHD is not recognized and treated. That just can’t be the case when nearly two million Canadians are affected by this disorder.  We need to hear the voices of those impacted by ADHD.

Check out How a Few Minutes of Your Time can Effect Change!

CADDAC is inviting everyone living with ADHD, their friends and families, medical professionals, educators and celebrities, to share their experiences and revelations about ADHD by submitting a brief selfie video recorded using their smartphone. They can also send an audio message or written story if they prefer. People are also encouraged to share their stories on Facebook, Twitter, and Instagram, using the #ADHDspeaks hashtag. Participants can obtain more information and tips for recording and submitting their thoughts and stories on CADDAC’s website: www.caddac.ca.

Check out

October 2, 2018 Media Release

A personal ask from Heidi Bernhardt, the President of CADDAC

A personal ask from Patrick McKenna, actor, director and comedian

View Celebrity ADHD videos rolled out during October, ADHD Awareness Month 

New research just published in the Journal of the American Medical Association is questioning whether heavy use of media platforms over time can increase the presentation of ADHD symptoms in adolescents. The study looked at the use of 14 different digital media activities using platforms such as social media, texting and streaming media in a large number of adolescents, 2587, in grades 10 to 12. According to their responses they were divided into three categories, no use, medium use and high use. Adolescents with pre-existing ADHD symptoms were intentionally excluded from the study.

The study’s findings reported that among adolescents followed up over 2 years, there was a statistically significant but modest association between higher frequency of digital media use and subsequent symptoms of ADHD. The results indicated that those with low use of digital media over the two-year period, about 500 adolescents, had the fewest number of symptoms, 4.6%. Those with highest use of digital media showed the highest rate of ADHD symptoms, between 9.5% and 10.5%. The researchers cautioned that the study's findings did not prove cause and effect; more research would be needed to do so.  However, they were confident in saying that higher levels of digital media use did increase the likelihood of ADHD symptom presentation in the future.

Please access these links for more detailed information and expert opinion on the study.

To view the study overview

Forbes article

Expert Reaction to the study

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