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=The IQ discrepancy model is outdated and irrelevant for diagnosis.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
Dekker Delves into Dyslexia 
As a teacher in India getting parents to assess their kids is an uphill task. I have seen my students being oversensitive to emerginf strong self believers and now doing well in life. I don’t think a change in the word will change the condition but I do feel parental education is really required. By running away from the truth they do more harm than good to their child.
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I’m always in two minds about any label. On one hand it is nice to have a name for a thing. On the other hand the name can define you, nobody is just one thing. I think its more what we attribute to the label that can be the problem.
My 20 year old son was assessed as Dsylexic that was helpful in understanding his education needs when he was around 8 years old. However, it was like a black cloud over his head at school. When they were given the results of the assessment the teachers treated my son as if he had an intellectual impairment. He left school in year 8. I home schooled him but by that stage his self esteem was shot. Years of being threatened by teachers that they would have him sent to special school if I didn’t do something. I was a single mum working three jobs to keep a roof over our heads.
If the label wasn’t there maybe they wouldn’t have thrown my son in the two hard basket. My son doesn’t have an intellectual disability. He still thinks he is worthless, stupid and a retard. He lives an isolated life with me doing Art and playing computer games.
I guess you are all thinking I should do more.
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It is a hard call. Depends on the kid, the school, the country and all those little factors can add up. Maybe if he was never given a name for it would be even worse! In our support group we have many parents home schooling and many struggle to get them to do anything. It has taken me about 3 years to take the fear away from schoolwork for my child and she has had the benefit of an awesome tutor. Please join our support group Dyslexia Support Australia. (Even if not Australian) maybe you can find some ideas or just an understanding shoulder to cry on! On Facebook https://www.facebook.com/groups/220307061381034/
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Great post. I too love the word Dyslexia. It is empowering, especially with Richard Brandon’s ‘Made by Dtslexia’ group. That tag line is something to be proud of. Our kids are brilliant and creative…not in spite of, but because of their unique dyslexic brain.
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