According to a new study on the Family Burden of Raising a Child with ADHD the cost of raising a youth with ADHD was more than five times greater compared to raising a youth without ADHD. The total economic burden per child with ADHD was $15,036 US compared to $2,848 per neurotypical child on average. This cost difference remained even after additional disorders such as intellectual impairment, oppositional defiant disorder symptoms, and conduct problems. Costs for medication and the direct treatment for ADHD were not included in these costs.
These additional costs were due:
These findings will not be surprising for families of children or grown children with ADHD, but having hard data could be very helpful in our Disability Tax Credit advocacy efforts.
CADDAC and CADDRA are currently in communication with the federal government about CRA’s handling of Disability Tax Credit applications. In a recent letter to Senator Jim Munson and Diane Lebouthillier, the Minister of National Revenue, CADDRA stated that a recent survey of ADHD medical professionals reported that they had experienced an increase in requests for additional information even when that information was present in the original application. This has resulted in the filling out these forms becoming an onerous task taking away time spent more appropriately on patient care. CADDRA members also indicated that they felt that CRA was not respecting their expertise as qualified health care practitioners. Also in this joint letter, CADDAC reported that a recent survey of individuals with ADHD and their families found that 63% of patients with ADHD were denied the DTC even when their physicians found them markedly impaired in keeping with the DTC criteria.
The letter went on to say that while CADDRA and CADDAC appreciated the work done in recent reports, the Senate Standing Committee on Social Affairs, Science and Technology: “Breaking Down Barriers, a critical analysis of the Disability Tax Credit and the Registered Disability Savings Plan” and the “Disability Tax Credit: Medical Practitioners’ Report”, October 2018, both these reports lacked vital input from neurodevelopmental organizations such as CADDRA and CADDAC. Both organizations offered our expertise both in general and with respect to disability assistance to the government.
For additional information on the study access
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 firstname.lastname@example.org
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.”
“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.”
“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 email@example.com
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.
This past weekend an important opinion piece, written by several prominent BC ADHD experts was published in “The Province”, a daily newspaper published in BC.
The piece entitled, “Opinion: ADHD is a real brain disorder requiring treatment, despite what some say” opens with a request that BC medical colleagues demand that the Therapeutics Initiative, which is government funded in the amount of 10 million dollars, be de-funded again. The opinion piece goes on to state that the report, or therapeutics letter, created by unnamed experts, most likely none of which are paediatricians or psychiatrists, cherry-picked research and grossly misrepresented ADHD evidence to support their ill-intentioned claims and prejudices. The ADHD experts equates the Therapeutic Initiative’s report, which questions the safety and validity of ADHD treatment, to a psychiatric version of the vaccination debate.
The comment piece outlines the abundance of current ADHD research and the impact of untreated ADHD and states that, “The increased use of ADHD medication in BC is heartening because it suggests that more children are being diagnosed and treated. However, with only four per cent of B.C. children receiving treatment, ADHD is still under-diagnosed and often goes untreated.” While the piece points out that medication is not required by everyone with ADHD, it also states that large review studies have shown and continue to show the benefits of treating ADHD with medication. Furthermore, these medications have been prescribed for more than 80 years.
It is extremely disheartening for those of us who work in the field of ADHD and for those who themselves have ADHD or family members affected by this disorder to be required to continually justify the diagnosis and treatment of a medical disorder that has been proven to be significant and real. What is even more worrisome is that the type of report published by the Therapeutics Initiative, which according to the ADHD experts would never have been published in a legitimate medical journal, was put out by the media only furthering the misinformation on ADHD.
The only way to stop this type of misinformation from continuing to be spread by the media with a goal of sensationalism is for those of us in the field and those impacted by ADHD to speak up.
Therefore, CADDAC sincerely congratulates and thanks these physicians, Drs. Diane McIntosh, BSc Pharmacy, MD, FRCPC, psychiatrist and clinical assistant professor, UBC; Derryck Smith, MD, FRCPC, psychiatrist and professor emeritus, UBC; Don Duncan, MD, FRCPC, psychiatrist and clinical assistant professor, UBC, clinical director, B.C. Interior ADHD Clinic; Dorothy Reddy, BSc, MD, FRCPC, research fellow, psychiatrist; Julia Hunter, BSc, MSc, MD, FRCPC, psychiatrist, for speaking out.
CADDAC strongly encourages families and adults impacted by ADHD to send a letter to the editor of any publication that furthers the spread of misinformation about ADHD, even when it is an opinion piece. The test that I use when reviewing an article on ADHD is to question whether the same bias and questioning about the validity of the disorder would occur if the mental disorder being discussed was depression.
I just found out about a brand new area of research on ADHD that I find fascinating. For many years I have wondered why those, including family members, with ADHD express extreme reluctance and sometimes downright refusal to tackle certain tasks that others find simple.
I was alerted about a recent study looking at Differences in Perceived Mental Effort Required and Discomfort during a Working Memory Task between Individuals At-risk And Not by one of our members who was confused by the term “at-risk for ADHD”. So, I decided to go directly to the source and contacted Maggie Toplak, one of the researchers, who I happen to know. Dr. Toplak shared my questions with her co-researcher on this study, Dr. John Eastwood.
Here is the information that was provided by Dr. Eastwood.
What does the term “at-risk for ADHD” mean?
We used the Adult ADHD Self Report Scale (ASRS), which is a symptom checklist based on DSM diagnostic criteria. It is used as a screening tool to identify who would likely meet criteria for ADHD. However, it is not a full, formal assessment. Thus, we labelled those who were identified on this screen as likely having ADHD as being "at risk".
What is this study looking at?
There is little work on ADHD and the experience of mental effort. Most models assume that those with ADHD avoid effortful tasks because they either have diminished capacity to complete effortful tasks and/or because they lack motivation to complete effortful tasks.
What are the findings to-date?
Our work is hinting - much more still needs to be done - at the possibility that individuals with ADHD experience effortful tasks as being more distressing and uncomfortable than those without ADHD. Sort of like a strong negative emotional response...even in situations where they are doing as well as those without ADHD. The idea is that the same situation is experienced differently. So it may be less about cognitive ability and motivation and more about emotion. The same mental task gives rise to different emotions for those with and without ADHD. If so, this means we need interventions that focus on reducing the emotional reaction to effortful tasks rather than simply interventions that work on increasing executive functioning skills (to improve ability on tasks and ability to self-regulate motivation).
Access information on another study in this area HERE
Provided to CADDAC by Gina Pera author and educator
In recent years, biomedical research has identified many "drug-response genes.” These are genes that wield a substantial impact on how people react to medications.
Several companies are making consumer-level tests available, with ADHD medications as well as with medications for depression and more. These purport to identify the kind of drug-response genes the consumer might have. For now, these tests require a physician’s prescription. That does not mean, however, that every physician ordering these tests know how to correctly interpret the results.
The point of this blog series: to help mental healthcare consumers understand how these test results might prove useful—and how the results are extremely limited.
Though far from perfect, these tests can now provide valuable insights into what drugs, at what dosage, might be best for treating your or your loved one’s ADHD— and which drugs might pose complications.
Points to note:
ADHD Gene Testing Series: A Recap
Part 1 provides an overview to the topic of genetic testing as it relates to ADHD medication-response.
Part 2 shares testing results for my husband (who has ADHD) and me (who does not), along with my husband’s personal reactions to our disparate genes.
Part 3 defines what is meant by the term genotyping test. Briefly, it’s a test that informs you of your genetic particulars. Specifically for our purposes in this blog series, it refers to tests that identify which variants of the drug-response genes known to be associated with ADHD medications that you have.
Part 4 explains how, when, and why this data might prove helpful, delving more deeply into the topics of pharmacokinetics (what your body does to the medication) and pharmacodynamics (what the medication does to the body).
Part 5 reminds that genotyping data provides only one piece of the puzzle. There are many other factors that can affect how well a medication works for you, including overall health factors and co-existing conditions.
Part 6 looks at the specifics of Gina’s testing results,
Part 7 looks at the specifics of Gina’s testing results,
For more information of Gina's books and blog please access:
Since 2010 CADDAC has shared our concerns about the direct substitution of methylphenidate ER-C, a generic medication, for OROS® methylphenidate (Concerta) with Health Canada. This was done through documentation, caregiver and patient survey results and several face to face meetings.
A Canadian research paper reviewing data on this issue, was recently published in the Clinical Therapeutics Journal on drug therapy. The new paper, “Differences in Adverse Event Reporting Rates of Therapeutic Failure Between Two Once-daily Extended-release Methylphenidate Medications in Canada: Analysis of Spontaneous Adverse Event Reporting Databases” looked at treatment failure adverse events of generic versions of OROS® methylphenidate (Concerta).
The research paper reported that a 10-fold higher reporting rate of therapeutic failure adverse events was found with the Canadian generic product, methylphenidate ER-C (Teva product) as compared to OROS® methylphenidate (Concerta). Although adverse events are more typically thought of as additional unwanted effects of a drug (e.g. a headache or rash), if a product fails to produce its expected intended clinical effect, or fails to produce its clinical effect for the intended duration, there may be an adverse outcome for the patient, including an exacerbation of the condition for which the product is being used. The Health Canada Guidance on Reporting Adverse Reactions to Marketed Health Products provides the example of a patient whose condition is well-stabilized, but deteriorates when the patient changes to a different brand or receives a new prescription as an example of an unusual failure in efficacy, which is a reportable adverse event.
Additionally, the study compared Canada-US data and demonstrated that this 10-fold increase in Canadian therapeutic adverse events was very similar to data seen with a US generic product by Mallinckrodt. This US product's bioequivalence status has been removed by the FDA and it is being considered for further regulatory action. Adverse consequences for patients, such as disruptions in academic performance, school suspensions, and onset of adverse social behaviors, showed similarities between the US and Canadian generics. The Canadian study data reported that “Impacts on social functioning, such as disruption in work or school performance or adverse social behaviors, were found in 22.2% of cases.” US reports for the methylphenidate ER generic product identified adverse impacts on social functioning in more than 30% of cases.
The paper also highlighted differences in the generic medication from the brand Concerta Plasma (blood) concentrations. The generic product concentrations peaked approximately 2 hours earlier and declined more rapidly than those of Concerta. As one would expect, adverse event time of day data, showed “overdose like” symptoms to be more common in the morning and lack of efficacy to be more common in the afternoon. Methylphenidate ER-C, was reported not to be effective throughout the duration of the day in 42.6% of Canadian cases, with this early loss of efficacy occurring in the afternoon for 64.3%. Signs or symptoms of too much methylphenidate exposure were also reported in 13.5% of the cases with 58.1% occurring in the morning. Therapeutic failure occurred within one week of starting treatment with methylphenidate ER-C in 72.1% of the cases.
CADDAC’s experience was included as well, “Since the market approval of the first generic drug in Canada, the Centre for ADHD Awareness Canada (CADDAC), a patient advocacy group, has received reports of issues with generic methylphenidate ER medications, including shortened or reduced clinical effects and adverse events.”
The paper concluded that “The results of the current study are consistent with a growing literature pointing to a potential safety issue with the methylphenidate ER-C generic product. Taken together, this information suggests that an investigation should be conducted by Health Canada, to evaluate the potential differences between methylphenidate ER-C and OROS® methylphenidate. If important differences are identified, this would further suggest that the bioequivalence metrics currently used to support the interchangeability of OROS® methylphenidate with methylphenidate ER-C may not be adequate.”
Earlier this year Health Canada (HC) released a notice regarding consultation on the proposed modification to bioequivalence standards for this type of medication. In September, CADDAC contacted HC expressing our pleasure with this review, but asked whether any decisions made would also impact medications that had already been approved for bioequivalency. This is information is important because the medication for ADHD in question would fall under this category. If this was not to be the case, CADDAC wanted to know whether labeling informing patients that this medication was approved under old guidelines would be required. CADDAC has yet to hear back from Health Canada.
While researching this topic I came across several articles listing a variety of Apps that can be useful for those with ADHD. Not surprisingly, many of these APPS are simple reminders, or assist with time management and organization. Some are designed for children, such as Epic Win which turns boring chores into a fun role playing adventure, or 123Token which rewards positive behaviours with a token system.
An APP named Rescue Time builds reports on how you spend your time. This allows you to track time spent procrastinating as compared to time spent on productive activities. Another APP, Freedom, allows you to set the time(s) that your internet is turned off, allowing you to restrict distractions at the end of day or for particular periods during the day. We all know that e-mails and social media etc. can be hugely distracting if not limited. Others are designed to help build healthy habits, manage your money and restrict impulsive spending.
A note of caution; be leery of Apps that claim to improve executive functioning and decrease ADHD symptoms. To date there are no peer reviewed, large scale studies that back up these claims.
Articles on Apps for those with ADHD
It was with great interest that I reviewed an Australian study looking at academic achievement in students with ADHD during the period from childhood to adolescence. Having spent the last twenty years speaking with researchers, parents, educators, school boards and Ministries of Education across Canada I firmly believe that this study highlights the same situation that we have here in Canada.
The study published in the Journal of Developmental and Behavioral Pediatrics showed that 40% of students with ADHD were not reaching minimum standards for literacy and numeracy in at least one academic area such as writing or math. Based on test results in year seven, which is equivalent to our grade seven, 73% of students with ADHD had a problem with writing and almost a quarter scored below the minimum standard. By year nine things had become worse; 54% of students still had difficulties, however now 37.5% did not reach the minimum standard. What was also interesting was the fact that boys had far greater difficulty with writing than girls. The lead researcher, Nardia Zendarski said that they had expected to see a gap in academic success for students with ADHD, but not such a large gap.
Professor Harriet Hiscock, a consulting paediatrician with the Murdoch Children's Research Institute that ran the study, said problems arose for students with ADHD particularly in English subjects, due to issues with writing, spelling and grammar. "They're quite sophisticated things that we learn how to do," she said. The frontal lobe of the brain, which we know is not as developed in children with ADHD, is used in this type of task.
Remarkably, 75% of children looked at in the study were on medication to increase their attention. This fact led Ms. Zendarski to state, "ADHD medication has its place but it doesn't seem to improve long-term academic outcomes … it doesn't address the core academic skills." She went on to say, "We should stop focusing on the argument around whether these kids should be medicated or not and start focusing on providing services and support that they need to reach their full potential. These programs could be used to support all kids with learning difficulties.”
"We need to look further back and see when the problems start — do these problems start for kids as early as grade one?" said Professor Hiscock. "And if they're not picked up and addressed, particularly in primary school, then these kids get into high school where it becomes harder, the work becomes more complex. So we're seeing the problems become worse."
Professor Hiscock went on the say, “The solution is not clear cut, but better support and training of teachers would be a good start. More support around literacy and numeracy teaching, probably it's got to be small groups, more individualised teaching."
Tracy-Ann Pettigrew a mother with two sons with ADHD went back to university to study special education in order to assist her sons with school. There's not a lot of understanding by mainstream teachers about how to teach kids with additional learning needs and it's a tough gig," she said. "I am hoping that this will facilitate some meaningful change, so that teachers can learn the skills that they need to learn to be able to support these kids."
Ms Zendarski closed by says, “As education is a key determinant of overall quality of life and health, I can't think of a better area to concentrate our efforts,"
Access the Institute’s REPORT
Access articles on the study:
Children with neurodevelopmental disorders like ADHD have been excluded from general guidelines on screen use by the Canadian Pediatric Society because children with these disorders are at greater risk for internet addiction. Dr. Umesh Jain, a Child and Adolescent Psychiatrist specializing in ADHD, believes that children with ADHD should only be in front of a screen for educational purposes. He believes that screen time can be addictive for children with ADHD with the same cravings and withdrawal effect as other addictions. He also believes that it deteriorates social skills of children with Autism since they quickly become dependent on the Internet for their social interaction. Dr. Jain states that screen time is altering the brain of children with ADHD by “softening and altering cortical structures”. He’s basing his recommendations on studies out of South Korea pointing to ADHD as the most common reason for Internet addiction under the age of 12.
Dr. Randy Kulman, a child clinical psychologist from Rhode Island, believes screen time for children with ADHD and ASD should be tailored to their learning challenges, but does recognize the increased risk to those with ADHD. Children with ADHD crave stimulation that these online interactions provide.
Access the entire article by Patricia Tomasi HERE