Dyslexia and Demons

Facing the fear of school

“The vast majority of children with learning disabilities have some emotional problem associated with the learning difficulty” Abrams 1986

I sit here while my children play happily with their friends…..feeling sad, anxious and a little sick. It’s the last day of school holidays and tomorrow is the day we dread every year. The day filled with fear and doubt. The day that marks the beginning of another year I have to face as a mum of a child with multiple learning difficulties and anxiety.

Tomorrow is also extra special as it marks the start of High school. I taught high school so you would think I have nothing to fear…..but I know the reality of what she may face. I know, despite great groundwork laid down by the very professional and caring Learning Support Teacher, that there will be teachers who do the wrong thing, say the wrong thing, ignore all professional advice and make our lives difficult!

Our visit to the psychologist on Wednesday went well. We have great management in place. Cognitive Behaviour Therapy at age 8 gave me back my happy child that I had not seen for such a long time! Last year was the first year since year 2 my daughter didn’t have an anxiety vomit on day 1! She has come so far that her anxiety for the start of the year is somewhere close to within the normal range for any child off to highschool without her main friends. This year she has been quite brilliant and I’m so proud of her!

I still worry. She still worries. Despite great anxiety management, work on her self esteem, strategies to battle the learned helplessness the scars still remain. The mental health side of things holds my child back far more then her learning difficulties.

“Research has shown that individuals with learning disabilities;
_may experience increased levels of anxiety.
_may be at greater risk for depression.
_experience higher levels of loneliness.
_may have a lower self-concept.
_are at greater risk for substance abuse.
_may be at greater risk for juvenile delinquency”

Adapted from Great Schools 2016

It comes as no surprise that children with dyslexia suffer from a much greater rate of mental health issues. The moment they walk into a classroom, where literacy is the focus, they are confronted daily with their greatest area of weakness. The expectation is that learning to read is the initial purpose of school. My daughter first cried going back to school in term 2 of Kindergarten. She had a lovely caring teacher but unfortunately she wasn’t receiving the explicit literacy instruction that she needed.

When a child fails in the primary task of schooling they are forced to judge themselves, are judged by other and live daily in a world of stress. That stress follows them home in the form of homework and adult expectations. Only the most resilient children can survive such a traumatic and constant onslaught. This often results in feelings of embarrassment, humiliation, anxiety, anger, frustration and guilt. Eventually a situation of learned helplessness results as the student will no longer even attempt to do something new or something they have failed in the past. They see no point in trying as they are convinced they will fail. Anxiety will increase the impact of dyslexia leading to a vicious cycle of increased anxiety, decreased motivation, frustration and failure.

My husband in recent years changed companies. For 2 years he battled a job that he hated. He gained weight. Drank more. Was constantly stressed and cranky. So he changed. Yet we ask a child to walk into a place everyday where they are faced with failure. They are tasked with learning the most difficult skill they may ever learn. Reading. Yet if not supported and instructed well they will face 12 years of heartache and failure.

No child should ever be afraid to go to school. Without the feeling of safety and support we are not creating an environment in which learning will occur.

We need to…..

*Ensure all children receive evidenced based, rigorous literacy instruction.
*Identify those at risk of reading failure early, early and early.
*Ensure all children who are struggling receive evidenced based intervention.
*Identify children at risk of mental health issues early.
*Ensure children receive professional advice for mental health.

Please see Mental Health and Dyslexia Fact Sheet also available in Fact Sheet menu. https://www.dropbox.com/s/zvg9ks1y6vzujn7/Mental%20Health%20Fact%20Sheet.pdf?dl=0

References
Abrams, J. C. (1986). On learning disabilities: Affective considerations. Journal of Reading. Writing, and learning Disabilities. 2, 189–196.

https://www.greatschools.org/gk/articles/learning-disabilities-and-psychological-problems/

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I don’t believe in Magic cures, Unicorns or pink bunnies!

(My daughter is very unimpressed by this title! She loves unicorns!)

This blog underlies the fundamental principles of my blog and hence my tag line “I take no prisoners!” As an administrator of Dyslexia Support Australia and on twitter I have been viciously hounded for my stance on “alternative therapies”, including appalling private messages and personal abuse. I believe that parents deserve to be given all the evidence, or lack there of, about a potential therapy before making an informed decision. I’ve been frequently called closed minded. But there is no point in being so opened minded that your brains fall out!

Dyslexia attracts more than it’s fair share of magic cures! Some are downright ludicrous and so far from our understanding of Dyslexia that it is incredible that anyone would fall for their slick marketing campaigns. Music to reboot brain waves, camel milk, funny electrodes that you stick on your head, coloured prisms, wiggly lines on computers, balancing on one foot, mental imagery, orientation points and many more! When marketed with enthusiasm, plenty of cash, wondrous anecdotes, and science terminology sprinkled in for good measure, they dazzle parents desperate for a quick solution to their child’s struggles.

Unfortunately the current education system in Australia does not address dyslexia adequately opening the door to a range of Dyslexia “treatments”. Parents are desperate and feel powerless, thus making the lure of well marketed alternative therapies irresistible. Evidence based remediation for reading difficulties can be a long and arduous road making “shiny cures” that promise instant or quick fixes tantalising. Due to a significant lack of understanding of Dyslexia, alternative therapies are often recommended by teachers, doctors, speech pathologists and psychologists who fail to assess the evidence for these practices…..I have heard many parent stories in our support group of “alternative therapy” recommendations from professionals.

But how do we know if the therapy is not a groundbreaking new treatment that is just being ignored by mainstream science. How do we seperate the snake oil cures from the exciting potential new intervention?

Scientific investigation!!

As Barry Beyerstein pointed out “Though most solitary visionaries ultimately turn out to be cranks, every so often one proves to be the pioneer in a new and important branch of science. It is well to remember, though, that the heroes of these rare success stories brought the initially doubting fields around by force of evidence, not mere conjecture and special pleading. It is up to the claimant to support his or her own case and the scientific community is generally well-served by its institutional scepticism.” Beyerstein, B (1995).

Peddlers of treatments and interventions aimed at children with learning difficulties have a moral obligation to support their wild claims with strong empirical evidence. The more exaggerated the claim the greater the need for valid research. There are far too many products on the market that have been around for decades, fly in the face of what we understand about Dyslexia and have been “invented” by someone whose background is not remotely connected to any discipline with expertise in Dyslexia. Even when they believe in the validity of their treatment the onus is on them to prove it works before they possibly negatively affect the lives of so many families. The responsibility does not fall upon the scientific community to unmask the flaws in your product!

“Consumers should expect providers to go to the market with already-tested, replicated, and high-level evidence before they ask people to sign-up to an expensive intervention. We don’t expect cancer patients to organise their own randomised controlled trials of new treatments, so why should it be left to schools (who don’t typically have the appropriate expertise on staff) to stumble around and try to work out whether an education intervention is an appropriate investment above and beyond what they are already doing (or could be doing)?” Professor Pamela Snow (2015)

The failure of such interventions on struggling children wastes not only limited financial resources but can also have a significant psychological impact on children already vulnerable to self esteem issues, anxiety, depression and learned helplessness. The promise of a solution for a struggling learner is tantalising but failure of the touted solution when promises were grand can have a serious impact. Delay in appropriate remediation can be catastrophic as research shows early intervention is paramount.

“While the use of a nonvalidated approach may not pose an imminent threat to the safety of individuals, it could deprive people of exposure to effective interventions, waste valuable time, and provide false hopes that may lead to feelings of discouragement after the approach fails to produce the desired outcome.” Hyatt, Keith J.; Stephenson, Jennifer; Carter, Mark (2009).

Despite scientific evidence to the contrary or the complete absence of research many therapies rely on glowing testimonials and anecdotes. Unfortunately when parents have mortgaged their house and put all eggs in one basket they seemed compelled to convince others of the virtue of this miracle treatment. Not only do they want to believe in the treatment, they need to believe in the treatment. Reliance on testimonials and anecdotes by a treatment intervention flies in the face of scientific theory. Psychological effects of treatments such as the placebo or Hawthorne effect, particularly with struggling children suffering from low self esteem, can produce significant temporary outcomes which need to be accounted for by scientific investigation.

Testimonials and anecdotes are unreliable as they are subject to selective positive memories, bias and self deception. Even in scientific research early investigations can be falsely positive due to unintential bias and enthusiasm by a researcher keen on a new treatment and new research tends to be a small sample size.

The fact remains there are evidence based interventions for dyslexia that have a proven track record of efficacy. Systematic and explicit phonics has held up to frequent scrutiny. Metaanalysis research in 2014 of a range of intervention studies found that “The results revealed that phonics instruction is not only the most frequently investigated treatment approach, but also the only approach whose efficacy on reading and spelling performance in children and adolescents with reading disabilities is statistically confirmed. “Katharina Galuschka, Elena Ise, Kathrin Krick, Gerd Schulte (2014)

To delay effective evidence based treatment in exchange for alternative therapies can have a huge cost. Parents, educators and health care professionals have a responsibility to children in their care to demand valid research evidence for dyslexia interventions. It is time education applied the same standards of evidence as the medical community. Without evidence we are floating children in a world of fairytales and broken promises.

The reality is I could not sleep at night if I thought the lovely parent anecdotes in our support group were the only information parents recieved when making life altering decisions for their child. As heartwarming as a child’s belief in unicorns and pink bunnies is, it is more satisfying to think all kids could read fantasy stories too!

References
http://www.sld.cu/galerias/pdf/sitios/revsalud/beyerstein_cience_vs_pseudoscience.pdf

http://pamelasnow.blogspot.com.au/2015/05/why-not-everyone-is-enthusiastic-about.html

https://www.researchgate.net/profile/Jennifer_Stephenson/publication/236777599_A_Review_of_Three_Controversial_Educational_Practices_Perceptual_Motor_Programs_Sensory_Integration_and_Tinted_Lenses/links/546a68c70cf20dedafd38827.pdf

https://www.ncbi.nlm.nih.gov/pubmed/24587110

The Dirty “D” word

Should we use the word Dyslexia?

This blog came to mind last week when a new member of Dyslexia Support Australia was totally confused about the psychologist report because it stated a diagnosis of Specific Learning Disorder in Reading. The question whether we should use the word Dyslexia is asked a lot in our support group and it is probably obvious my view on the word Dyslexia but it is a much debated question. Overwhelmingly parent members of our support group believe the Dyslexia label was positive for their child.

Your personal opinion of whether the label Dyslexia is used will depend on individual experiences as a parent, specialist or teacher and country. So I come to this debate as a parent, ex school teacher and administrator of a strong Dyslexia community in Australia.

There has been considerable debate for many years, particularly in academic circles, that the word Dyslexia should be removed from diagnostic use. There are many valid reasons for the removal of the term.

Julian Elliot and Eleanor Grigorenko in their book the Dyslexia debate argue;
The term Dyslexia is not well defined.
=The IQ discrepancy model is outdated and irrelevant for diagnosis.
=Failure of the label Dyslexia to deal adequately with a child’s inappropriate self labelling.
=The label fails to ensure adequate intervention and is irrelevant to effective literacy instruction. He also argues such a label attracts a range of unproven therapies.
=Basing examination provisions on diagnosis can be unfair for those who have not been assessed.

I agree with some of the points raised, particularly with the word Dyslexia being hijacked by snake oil merchants to promote their product. However, as parent of a child with Dyslexia and Dyslexia advocate I think the word has a lot of value and power. My daughter was identified and assessed as dyslexic the day the media was all over the Dyslexia Debate book. My mother remarked to me that labels were not always a good thing. My reply was that Dyslexia was a much better label than dumb, stupid and lazy. My daughter had called herself all those things and so had others.

Having the label Dyslexia empowered me as a parent and gave my daughter back her self esteem. She loves being part of the dyslexic community. The word Dyslexia allows her to have role models such as actors, authors and business people who openly talk about their Dyslexia. The label gave us hope in the future. I really can not imagine the dyslexic community embracing any other term.

We need to certainly move towards;
=Early and adequate diagnosis and assessment.
=Evidence based literacy instruction for all children.
=Adequate evidence based intervention for all children who struggle with literacy despite the cause.
This is achievable without removing a word that has such a long history and community following. Such debate just detracts from the immediate and most pressing issues and causes unnecessary division.

Whilst the term Dyslexia is used inappropriately by promoters of reading products it has a clearly defined diagnostic criteria in the DSM-5 and can be adequately identified by well trained and experienced professionals.

Though the authors are somewhat correct that diagnosis does not necessarily lead to appropriate intervention it is definitely a valuable tool in acquiring appropriate remediation. In our experience in the support group a diagnosis does give a parent more leverage in the system to advocate for correct intervention. Students who fail in reading are not being given adequate explicit, systematic phonics instruction. In Australia the support groups around the country with the label of Dyslexia are attracting thousands of parents seeking answers and are guiding parents towards evidence based instruction and appropriate remediation.

Whatever your belief in the word Dyslexia I think it is here to stay because there is such a strong community internationally embracing the word Dyslexia and it is unlikely to disappear even if professional bodies vote to remove it from use. It is time we turned our energies away from semantics and towards working together to make sure every child with Dyslexia has access to evidence based intervention and adjustments to learning so they can reach their potential.

“Science has moved forward at a rapid pace so that we now possess the data to reliably define Dyslexia … For the student, the knowledge that he is dyslexic is empowering … [It provides him] with self-understanding and self-awareness of what he has and what he needs to do in order to succeed.” Sally Shaywitz (2017)

References
10 Things to Help Your Struggling Reader * The Yale Center for Dyslexia & Creativity. (n.d.). Retrieved March 24, 2017, from http://dyslexia.yale.edu/PAR_10thingstohelpchild.html

IDA Responds to the “Dyslexia Debate”. (n.d.). Retrieved March 25, 2017, from https://dyslexiaida.org/dyslexia-debate/

Wheldall, Castles and Nayton, (2014). The Conversation, Should we do away with ‘dyslexia’? Retrieved Feb 22, 2017, from https://theconversation.com/should-we-do-away-with-dyslexia-24027