If your child has dyslexia, a change is taking place that could affect you personally. Please read on to find out what is happening this week—and what you can do about it.
As you may know, doctors use DSM codes to diagnose learning disabilities. If a disability doesn’t have a DSM code, most insurance companies and schools don’t view the disability as “real.” Dyslexia hasn’t had its own DSM code in the past, and that’s one of the reasons why it has been so hard for many kids to get the remediation they need to overcome the symptoms of dyslexia.
Last fall, dyslexia was given its own DSM code in the draft of the DSM-5 manual, which is due to come out in 2013. Over the past several years, the American Psychiatric Association (APA) has been revising the DSM manual and, in the draft, dyslexia was recognized as a real disability and given its own code of 315.00. That was great news, but the news didn’t last for long.
Unfortunately, the most recent draft of the DSM-5 no longer includes a diagnostic code specifically for dyslexia. This is a HUGE step backwards for our children, because if dyslexia isn’t considered a real disability, why would anyone treat it?
Dyslexia is a real disorder, and it can be diagnosed and treated. But when a disorder does not have a DSM code, it is very difficult to get a diagnosis and treatment. We at All About Learning Press strongly support the inclusion of dyslexia in DSM-5, andwe feel that the current revision represents a grave mistake.
Take a minute to sign this online petition to get dyslexia back in the DSM-5. Public comments on the DSM-5 are being accepted through June 15, and the International Dyslexia Association—which works tirelessly to help those with dyslexia—is collecting signatures to present to the decision-makers.
Once you’ve made your voice heard, please spread the word! Feel free to link to this blog post on Facebook to increase awareness, and please encourage your friends to take action as well. But don’t wait! The window of opportunity for public comments on the revisions to DSM-5 will end this Friday, June 15.
Then share below! Is it important to you to have dyslexia recognized as a real learning disability?
ADDENDUM:
Several people have emailed us wanting more information about the IDA’s rationale for wanting to change the DSM-V. Some have concerns that dyslexia is being labeled as a psychiatric condition, while others just want to know what practical value the coding has.
Dyslexia is neurological in origin—a fact that is affirmed in the actual definition of dyslexia that is accepted by both the National Institute of Health and the International Dyslexia Association. (You can see that definition in our article, What Is Dyslexia?) The fact that it is coded with a DSM code does not change that. The DSM is the resource for coding learning disabilities, sleep disorders, and other conditions that we might not readily consider under the umbrella of “mental health.” Without a code, dyslexia will not be as readily identified, and educational treatment will be more generic or not be offered at all.
The researchers on the International Dyslexia Association Scientific Advisory Board who are requesting the DSM-V change have backgrounds in pediatrics, neurology, cognitive science, educational intervention, and cognitive neuroscience, including neuropsychology. Check out their well-written (and not too long) position paper for a full explanation of their rationale.
Here at AALP, we hear from parents over and over that their school districts won’t acknowledge dyslexia as a real problem. The schools say that the child is just a slow reader. If we don’t name dyslexia, it is hard to relay that it is a legitimate problem that needs a specific treatment (namely Orton-Gillingham-type instruction).
In an ideal world, parents and teachers would know the signs of reading difficulty without ever having to put a name to it. They would sense what the problem is, and automatically know how to fix it. But that type of knowledge isn’t common in our culture yet.
The DSM names other learning disabilities, and by putting dyslexia in the same category, it will enable more kids to be diagnosed and receive the proper educational intervention.
If your child is educated outside the school system, it most likely isn’t necessary to have dyslexia officially diagnosed. I strongly support parents who notice their child’s learning difference and educate themselves on how to best help their child at home. That’s what I did with my own son. But for every child who is home educated by parents who are knowledgeable about learning differences and dyslexia, there are hundreds of children in the school system who are sadly left behind without the education that they desperately need and deserve.
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It is so important that dyslexia be recognized as a separate learning disability. Teachers currently are not taught to recognize it. If they do agree with a parent that there is a problem, the solutions they recommend are not useful to dyslexia. It took 3 years for me to get my son recognized and for _me_ to figure out what to do about it. We need more information and recognition out there.
Well put, Carrie! When educators learn the signs of dyslexia and the appropriate interventions, many kids can be helped. It shouldn’t take three years!
I shared this on my homeschool support group’s facebook page. I too have been surprised about the lack of knowledge and support. The school district here doesn’t even test for it, nor are teachers educated on how to spot it. Going down the road now of testing and vision therapy all out of pocket.
Hi Jeniele! Thanks for sharing with your homeschool support group!
My 6yr old is showing signs of dyslexia, as well as possible other issues. I know what a battle it is to even get started in the testing process, let alone treatments. I think it is awesome that you are bringing this to everyone’s attention. I have signed the petition, and shared it on facebook.
Thanks, Krystle! And feel free to email us at support@allaboutlearningpress.com if you have questions or need support during this process.
Please see: http://allpsych.com/disorders/dsm.html. The DSM (current edition DSM-IV-TR) is used to diagnose and treat PSYCHIATRIC disorders, also known as psychological disorders. Dyslexia is not included because it is not a psychiatric disorder. Unless you would like yourself or your child to be considered mentally unstable, I would rethink your stance on its inclusion. And in the future, please educate yourselves before starting ridiculous petitions.
I have a child with high-functioning autism and one with ADHD. I don’t consider either to be “mentally unstable” but sure would be upset if they couldn’t get help because they aren’t recognized as having a disorder. Your comment could be considered offensive to parents of children with special needs.
The current DSM recognizes four types of learning disorders: reading disorders, mathematics disorders, disorders of written expression, and learning disorders NOS (not otherwise specified). None of these categories include mental instability. Many insurance companies and schools will not accept a diagnosis of dyslexia or the necessary education plan without a DSM code.
The petition is hosted by the International Dyslexia Association. Their well-thought-out position paper can be downloaded here: http://www.interdys.org/ewebeditpro5/upload/IDAPositionDSM5(4).pdf. I encourage you to read their position paper.
From what I can tell, we’re not considering it a mental instability, but it is a reading disability (even though essentially it’s a learning style). Am I wrong about this?
Hi Betsy! You are correct: the issue is regarding the identification and treatment of dyslexia under the broader category of Specific Learning Disability. The purpose is to get dyslexia recognized with other learning disabilities so children can get the educational support they need. If dyslexia is not named or acknowledged, many students will not get the help they need in order to read and spell.
It is SO important to get our children the education that they need, no matter what their learning style. Both of my children were diagnosed with dyslexia last year and getting them the education (specifically Orton-Gillingham based) they needed has made ALL the difference. My first grader went from being able to read 5 words with tears and frustration to reading chapter books with relative ease (he is in a school just for children with dyslexia). My 3rd grader, whose dyslexia isn’t as bad as my sons, goes to public school and gets tutoring twice a week, has also shown much progress. I was flabbergasted when my daughter’s teacher told me she was so surprised to have a child in her class with dyslexia. She “just doesn’t see it.” When 20 – 30% of the population has dyslexia, she has seen it before and just doesn’t know what to pick up on. Our educators need an education in dyslexia and what to look for so that our kids don’t fall through the cracks. No wonder the US education system is so far behind other countries!
Dsm codes are in a book of psychology? And so I would need a nueological disorder to appear in this book in order to recieve help in a public school? This explains why they are so messed up. Dyslexia is already acknowledged by the NIH as a learning difference http://www.ninds.nih.gov/disorders/dyslexia/dyslexia.htm I would not want it in a book of psychology, and therefore will not sign this petition. It is my belief that if it is an acknowledged neurological condition it is of just as much value as a psychological condition.
If I recall correctly, 13 states with dyslexia legislation on their books in the public school sector. One of the best things parents of dyslexic children can do is become adocates to have legislation passed in their communities and states for dyslexic children to get the help they need.
Thanks for your feedback, Mary! Yes, the more parents and advocates can do to raise awareness of dyslexia in their communities, the better, I agree!
And you are correct that dyslexia is neurological in origin–in fact that is affirmed in the actual definition of dyslexia that is accepted by both the National Institute of Health and the International Dyslexia Association. The fact that it is coded with a DSM code does not change that. The DSM is the resource for coding all kinds of learning disabilities, sleep disorders, and other conditions that we might not readily consider under the umbrella of “mental health.” Without a code, dyslexia will not be as readily identified, and educational treatment will be more generic or not be offered at all.
The researchers on the International Dyslexia Association Scientific Advisory Board who are requesting the DSM-V change have backgrounds in pediatrics, neurology, cognitive science, educational intervention, and cognitive neuroscience, including neuropsychology. Check out their well-written (and not too long) position paper for a full explanation of their rationale: http://www.interdys.org/ewebeditpro5/upload/IDAPositionDSM5(4).pdf
It would be great if dyslexia were diagnosed by a neurologist, but I’m not aware that this is done. There is not a blood test, it does not show up on an MRI, etc. The pediatric neurologists in our town refer patients to a developmental pediatric practice for learning difficulties and they use the DSM codes. Testing done in the public school system is done by Educational Psychologists who also use the DSM codes. Some insurance companies will cover neurological disorders but not psychiatric problems. That is unfortuante, but in the absence of a concrete medical test, I don’t think it is likely we will see neurologists commonly diagnose dyslexia, If anyone knows of a neurologist (who is not also a psychiatrist or psychologist) who diagnoses dyslexia, please post to let the rest of us know.
My twin boys were diagnosed with dyslexia by a Neuropsychologist if that helps with some diagnosing.
As to neuro diagnosing and testing: Dyslexic brains CAN be seen on certain MRIs of some dyslexics. It’s my understanding the right lobe of the brain is actually larger than the left, and certain ‘wires’ of the brain will flow differently (seen on F-MRIs). In my area of Missouri I was informed neurologists will not perform Functional MRIs on children under the age of 18, unless it is a medical neccessity. Dyslexia is not concidered a neccessity. I was not given a specific reason. Bottom line is… I think the medical field DOES have ways of helping diagnose at least some dyslexics, but do not utilize the ability. More importantly, if dyslexia goes unidentified with its ‘specifics’, it gives educational facilities and work places loop holes to legally NOT have to give specific accomodations and aids to fit dyslexics (multiple sensory programs, certified dyslexic teachers, spell checker devises, voice/spelling devices, ect.). We are “supposed” to have an educational system built on a ” free and PROPER” education to ALL children! My diagnosed dyslexic son is ALREADY denied a large portion of accomodations (due to IQ being above or equivelent to age, reguardless the fact he can’t read outloud properly). This is one more loop hole for schools to force parents to take ALL responsibility of extra teaching/learning of the child, unless we parents settle for the children to be placed in special ed under standard education and passed grade by grade, year by year, with no TRUE progress at taming their problem. THese problems move into adulthood for the dyslexic’s future in the work force!
Yes, sadly the lack of identifying dyslexia in the DSM can impact an individual’s access to testing and services that would help him or her. People are more likely to get the educational intervention and help they need when we actually identify the issue. I hope you are able to work with your son and give him the help he needs!
I can attest that going through school without knowing you’re dyslexic is awful at best. Not being insured (like the vast majority of kids are these days) we couldn’t afford the constant tests required to determine if I was dyslexic, or rather by process of elimination (optometry, auditory, AD(H)D, etc…). Because none of my teachers took note that I scored perfects on all of my tests, but couldn’t show my work properly, I was shoved into remedial math every year for six years. But, since my IQ was tested at 156, I got zero help from schools. To not acknowledge that dyslexic children have a radically different way of learning is folly.
Randy, thanks so much for weighing in and giving us a look from your personal perspective. As you so eloquently put it, “dyslexic children have a radically different way of learning.” When we recognize that, and then customize instruction for the individual child, we can avoid shoving very bright kids into remedial classes fox six years as you experienced.
I’m not sure I get the relationship between the DSM code and Getting Help for Dyslexia. There’s tons of information out there, there are methods, curricula, specialists and experts galore! We can get help for our kids now! Heck, here we all are on AAS/AAR chatting it up with Marie and her team of other experts! Let’s say we got dyslexia listed in the DSM 5…..would that enable teachers to better identify possibly dyslexic students? Just having the code out there? I guess what I’m asking is, as a practical matter, what is this code going to do? Maybe have treatments covered by insurance? What else? I don’t see it adding value to the diagnosis process or the actual treatment…
Great question, Jamie. I’d say it’s one step in the process that needs to happen. Here at AALP, we hear from parents over and over that their school districts won’t acknowledge dyslexia as a real problem. The schools say that the child is just a slow reader. If we don’t NAME dyslexia, it is hard to relay that it is a legitimate problem that needs a specific treatment (namely Orton-Gillingham).
In an ideal world, parents and teachers would know the signs of reading difficulty without ever having to put a name to it. They would sense what the problem is, and automatically know how to fix it. But that type of knowledge isn’t common in our culture yet.
The DSM names other learning disabilities, and by putting dyslexia in the same category, it will enable more kids to be diagnosed and receive the proper educational intervention.
I strongly support parents who notice their child’s learning differences and educate themselves on how to best help their child at home. That’s what I did with my own son. But for every child who is home educated by parents who are knowledgeable about learning differences and dyslexia, there are hundreds of children in the school system who are sadly left behind without the education that they desperately need and deserve.
I was a “slow reader” in school and it wasn’t until my 20s when my husband told me I had dyslexia, no one ever bothered to test me in any of the five elementary schools I was in as a child
Thank you so much for sharing this information! I think it is very important for dyslexia to be acknowledged. I appreciate always having helpful information on your site.
Thank you for sharing this. It is crazy to me how dyslexia is treated, or in this case not treated!
It is important that dyslexia be diagnosed! Otherwise, children having it will not get accomodations when taking standardized tests.
Insurance normally will not cover dyslexia treatment since it is regarded as an educational issue not a medical issue. Unless your child is homeschooled I would have the issue handled in your school system.
This is so important, I sent this link to a friend. She has battled her son’s school for the past year to get him appropriate services. The teacher flat out told her there is no such thing as dyslexia! Even through my own experience of having my daughter tested, the psychologist told me that she couldn’t possibly be dyslexic, because she know the alphabet and the sounds letters make! Oh, if only learning to read was that simple!
I have a student with diagnosed dyslexia who has just started with me on All About Spelling. He is making quick work of the lessons and starting to say, “Oh, I’m not dumb after all.” Very encouraging to see how quickly attitudes can change when things start to make sense. Thank you again for a wonderful program!
Dyslexia runs in the male side of my family my brother is,my nephew is and my son is dyslexic so when my son started school i saw the signs,the school just put it down to bad behaviour but i knew he was”nt like that he was bored he could”nt understand the work so they used to put him a corner with a puzzle,as every parent would feel i was”nt happy with this so i moved his school.the new school hes in have been so good they give him one to one in the class room ,they put him back a year so he could catch up with help everything was going great until today when we went to look at a secondery school i was told he might have to go into year 8 instead of staying in year 7 because of his age,he will miss a whole year can they do that?now im worried what i throught was the right thing putting him back a year may not be????waiting to hear back from the school to see whats going to happen
I just found out that my son has dyslexia on Monday. He has had problems with reading, spelling, etc for the past 4 yrs and the school that he goes to is the one who told me he might have it and that they would test him for it. I am thankful for that but I really need to know more information about it and what I can do as a parent to help him. At this time he doesn’t have medical insurance but someone told me that since he has dyslexia that he could qualify for medicade or chips…is this a true statement does anyone know?
Hi Brandy,
I would start by reading this article on What is Dyslexia: http://www.allaboutlearningpress.com/what-is-dyslexia . There are some additional links at the end to some other articles. Our programs, All About Reading and All About Spelling, are based on the Orton Gillingham method which has been found to be successful for students with dyslexia. Marie is a member of the International Dyslexia Association, and is an instructor for the graduate level courses in Orton-Gillingham Literacy Training offered through Nicolet College in Rhinelander, Wisconsin. If you haven’t had a chance to read their story about her son’s struggles, you may want to check that out: http://www.allaboutlearningpress.com/our-story.
If you’d like another resource or two, there is a newer Facebook page, Moms of Dyslexics that might be able to offer some online support, as well as Marianne Sunderland’s blog, Abundant Life. She has an e-book, Dyslexia 101, that might provide a nice starting place, and her website has wonderful information, especially if you are considering homeschooling.
https://www.facebook.com/MomsofDyslexics?ref=ts&fref=ts
http://www.mariannesunderland.com/
The Dyslexic Advantage by Brock and Fernette Eide is a really good resource as well. I hope this helps! Merry :-)
My 9 year old daughter has been in 3k, 4k, kindergarten twice. She struggled her way through 1st grade and continues to struggle through second grade. She has a speech and language teacher, but also struggles with math. I researched dyslexia and my daughter shows several signs. I spoke with her teacher and she told me the school does not recognize dyslexia. If my daughter is not being helped with the correct disability how will she ever move forward. She gets into trouble on a regular basis because she also cannot retell what happened when she encounters problems with another child. The teacher believes my child is always lying. My daughter has a big heart. Shes always willing to help others and often puts her needs second. Why is she always the one who seems to be causing the issue at school? Shes frustrated because these teachers are not educated to deal with this disability and just agrees to whatever the other student says or what the teacher assumes because she feels no one will believe her anyway. Dyslexia needs to be recognized if we want our children to be helped and understood..