Hyperlexia – please share your advice and tips with one of our readers! Is this part of your autism experience?

Hyperlexia - get informed
Hyperlexia – get informed

A few months ago on our Facebook Page AutismTalk one of our readers, named Lori, asked “Has anyone heard of Hyperlexia, my son is very smart but struggles with comprehension? Reads 7 grades levels above his grade yet comprehension is still at grade level! Looking for suggestions on how to help him?”

Now I have a confession to make up until I read the question I have never heard of Hyperlexia (which may often come with autism) so, as you can imagine I was fascinated by the responses.

To those, like me who are not familiar  with the term Hyperlexia it is defined by Darold Treffert  in the Scientific American  as “the ability to read early” which when it presents itself in children on the autism spectrum “as a savant ‘splinter skill’ as one symptom of an autistic spectrum disorder. They read voraciously usually with astonishing memory for what they read, often accompanied by other memorization tasks and abilities, sometimes linked with number or calendar calculating abilities. There is marked obsessiveness and rigidity”.

It should been mentioned that Hyperlexia does not automatically come hand in hand with autism.  Indeed one type (actually called Hyperlexia Type 3) is often misdiagnosed as ASD.  Like its related condition Einstein Syndrome most children with a diagnosis developed in a fairly neurotypical fashion.  But this is the subject for a future blog post.

But back to Lori’s question.

Quite of a few of our readers were happy to share their experiences.  Amy, for example, was pretty confident of it being Hyperlexia when she remarked “If he taught himself to read at 2 I’d say its hyperlexia. Sounds a lot like my son.”

But Samantha wanted to know ““What tests were done for his comprehension? Maybe he can comprehend what he’s read, but he can’t express it written or verbally to explain what he read. Here’s what I mean; my 9 yr. old has Asperger’s. He has a 9th grade reading level. He was tested in 3rd and this year in 4th grade. After he reads, they give him a written test (this years was on the computer). He has a hard time gripping a pencil, so he doesn’t like to write. So he didn’t test well on the comprehension test in the 3rd grade because he didn’t want to write. So this year, they did computer testing and he also didn’t test well. I am guessing it is just because he didn’t want to do the test. He doesn’t like to be put on the spot and questioned and so he can’t explain verbally what he read about. So they stop the test and say that is his maximum reading level. But I know my son. I know he comprehends what he reads, even if he can’t pass a test about what he read. So what do you need to help your son with? He already reads 7 grade levels above his grade level. Then you don’t need to do anything. Here’s my advice: Sit back, relax, and be proud!””

Pamela gave some very useful advice “My oldest son (19) has Hyperlexia. Be sure to have appropriate goals and objectives in his IEP. There is a Hyperlexia group on FB that can offer a wealth of info. It is not just reading/comprehension….social skills and other factors can….may….will come into play. With proper supports (and making sure educators comply with IEP) he will thrive! My son is doing great at his university and totally independent.”

“I read all content, books, passages before my daughter does and note questions to ask throughout with reference to specific sentences. I then ask them, take her back to the sentence/paragraph and get her to explain how the person felt/what the science looked like etc. It’s a long process but now she knows she will be asked so she will read something then say ‘the boy was upset because his dog ran away’ it’s just a small portion of what she has read and she has ultimately ‘decoded’ the writing but knowing she will be questioned and I will go back through it with her is helping because ultimately she wants to read and then have the task finished. My daughter is 7 reads at the age of 14 and comprehends at the age of 3. It’s extra work and laborious and she HATES it but it works x x”” came the suggestion from Kerry.

But Stephanie shares “I would suggest reading the comprehension questions FIRST and then slowly reading the story and finding the answers, as he reads. This will eventually teach him what the comprehension questions usually consist of. Then, once he understands what information to look out for, he should be doing a little better. He may read more slowly, but at least he will understand what he’s reading. (I’ve dealt with this, my whole [reading] life.)”

We would like to end by sharing Michelle’s excellent suggestions “Please have Lori or anyone else who would like to know about Hyperlexia join us at : (just type this into your search bar, and request membership. I’ll approve you quickly.

Hyperlexia Parents Network on Facebook

A study from Nature Neuroscience offers new information on best practices for helping individuals with autism learn. The study shows that the traditional method of teaching through repetition may be flawed due to an ASD individual’s difficulty transferring knowledge from one context to another. In fact, the study indicates this teaching method may even be counterproductive to learning.

Also, here is a great website with so much information and articles, teaching aids, etc…: http://westwingpublishing.com/Hyperlexia_Parents_Network/Social_Media.html

You can also Google Treffert and Hyperlexia for a wonderful article about the types of Hyperlexia. My daughter is 12 and while we still struggle some, she’s doing great.”

So what next?

Well over to you.  We are really interested in the views and experience of both people with Hyperlexia and their families and caregivers.  Please do think in terms of the following questions but do bear in mind that anything you have to say will be of great interest to our readers.

  1. What were the original signs of Hyperlexia?
  2. How was it diagnosed/ were you told about it?
  3. What strategies did you put in place to help with the Hyperlexia?
  4. How successful were these strategies?
  5. What one bit of advice would you give to a person who has just been diagnosed with Hyperlexia? And to their families and caregivers?

Many thanks in advance for your help and we look forward to reading you comments.

Brain Inflammation and Autism Spectrum Disorder from by Dr. Sonya Doherty.

Dr. Sonya Doherty
Dr. Sonya Doherty

Dr. Sonya Doherty has very kindly allowed us to republish this fascinating article on autism and inflammation. She  is a licensed and board certified Naturopathic Doctor who is an active member of the CAND. Sonya Doherty completed her undergraduate training at the University of Western Ontario in a Bachelor of Science Honors Kinesiology program.  Very experienced in the field of autism you can access her website here.

If you have any questions about the article please feel free to ask them in the comments section at the bottom of the page.

According to recent estimates by the Centre for Disease Control (CDC), 1 in every 68 children has autism. Autism is a complex neurological disorder previously thought to be a mental health issue but mounting evidence is showing significant medical aspects to this growing neurodevelopmental disorder.  A study at Johns Hopkins published in 2005 identified that people diagnosed with autism experience inflammatory changes in their brain tissue.  This finding was crucial because it was a major step forward in redefining autism as a medical disorder that is may be treatable and reversible.

This article will briefly review some of the potential causes of brain inflammation and treatments that are being used successfully to help children today.  With a 30% rise in autism in the last two years, parents are eager to see research translate into treatments that can address medical issues like constipation and diarrhea, as well as advanced approaches that improve social, language and cognitive development.

 

How do methyl B12 injections help with inflammation?

 

Jill James, a PhD biochemist at the Arkansas Children’s Research Institute has identified that 90% of children diagnosed with autism have methylation impairments.  So, what does that mean?  Methylation is the process that supports development in the body.  When babies are conceived, they are not methylated.  As babies develop, methylation makes sure the brain develops properly and is protected against toxicity.  Impairments in this cycle stop the production of a brain antioxidant called glutathione.  Antioxidants protect the body and glutathione is the head honcho when it comes to protecting the brain.  In fact, depletion of glutathione is also one of the medical aspects of autism and is up to 80% decreased in the disorder.

Methylation is fueled by methyl donors and one of the best ways to improve how this cycle functions is by injecting methyl B12.  Dr. James Neubrander was the first physician to use methyl B12 to help children with autism.  What he noticed after injecting his first patient is what hundreds of practitioners have observed since, improved language, social and cognitive skills.  Methyl B12 injections help to remove inflammation by improving glutathione production.

Glutathione is important throughout the body but in the brain, it is the rate limiting step which means are it decreases; it is exactly like a battery.  The lower the glutathione, the more the brain is at risk for developmental concerns.

 Why is your child’s digestion so important in regulating inflammation?

It is estimated that up to 85%  of people with ASD have digestive issues including chronic constipation, diarrhea, reflux, esophagitis and pain.  Research from the National Institute of Health, Human Microbiome Research Project has identified that the gut is 100% responsible for post-natal development.  Microbiome is the term to describe the intricate ecosystem of microbes that populates our intestines.  These microbes include good bacteria that help with nutrient absorption, as well as regulation of inflammation and immune function.  Other research coming out of the microbiome project has shown that children with ASD have 25% less bacterial diversity, meaning that they lack important good bacteria that work to support development in many ways including production of neurotransmitters and genetic expression.  Studies by Dr. Sidney Baker have found that the stool of children with autism shows higher amounts of certain bacterial species (Clostridia, Bacteriodetes, Desulfovibrio) than may cause harm to the brain by creating more inflammation.

 

How do special diets help inflammation?

For me, special diets are a strategy to improve both methylation and gut health. The most well-known “autism diet” is GFCF.  Gluten free, casein free.  This diet removes all sources of gluten and dairy.  While there are multiple mechanisms by which removing these foods may help, the most important is that gluten and dairy stop the production of glutathione. One of the other ways gluten has also been shown to cause inflammation through stimulation of zonulin which increases gut permeability.  Usually, the gut cells are bound closely together, the space between them closely regulated.  Gluten creates inflammation is by causing the separation of gut cells by the activation of zonlulin.  Discovered in 2000 by Dr. Alessio Fasano, zonlulin causes the space between the cells to open, allowing parts of gluten to escape into the blood stream.  This process causes inflammation by allowing what should stay in the gut, out into circulation.

In my opinion, the most effective diet for improving symptoms of autism is the Specific Carbohydrate Diet.  Co-founder of Defeat Autism Now!, Dr. Sidney Baker agrees that this dietary approach is the most comprehensive way to healing the gut.  The fortification of folic acid in our grains (which are all removed in the SCD approach) also slows the methylation cycle.  Removal of grains supports the methylation cycle and its production of glutathione.  Research is showing that limiting complex carbohydrates could play a crucial goal in balancing the good bacteria in the digestive tract.   Research by Dr. Derrick MacFabe on the bacteria Clostridia, is helping to build a strong case for dietary carbohydrate restriction as a way to decrease the impact unbalanced gut flora has on the brain, behaviour, social interaction and cognitive function.  The Gut and Psychology Syndrome book is a fantastic resource for anyone embarking on dietary carbohydrate restriction.  Written by a neurologist with a masters degree in nutrition, it is a powerful book that explains the dietary approach that helped to recover her own son from autism.

 

What is causing brain inflammation in autism?

Moms who have the flu during pregnancy are at increased risk of their children having autism.  Viruses activate the immune system in the brain.  The Johns Hopkins study that identified inflammation in the brain also identified immune activation.  Termed, microglia, the immune system in the brain can turn “on” in response to a virus.  For most of us, the immune system turns on, and then we actually have a low level of brain damage which is then repaired by the brain.  In autism, this microglial activation doesn’t shut off and causes massive issues with managing inflammation in the brain because of too much of the most abundant chemical messenger in the brain – glutamate.  This is termed IMMUNOEXCITOTOXICITY. Broken down, this term explains that chronic activation of the IMMUNE cells (microglia) can cause the brain to become EXCITED to the point of TOXICITY.  At this point, the brain will not function normally and the excess glutamate that is causing the excitement causes damage.

Dr. Russell Blaylock, the neurologist who first postulated that IMMUNOEXCITOTOXICITY may be the central mechanism in autism, believes that both environmental toxicity and infectious agents can “prime” the immune cells in the brain.  Once “primed”, these cells will release higher amounts  of glutamate. After priming, the next time the glia are put on high alert from a toxin, infection or by metabolites from unhealthy gut bacteria, the release of large amount of glutamate can have disastrous consequences for the brain.

Research around the world is striving to make sense of the staggering rise in autism.  Inflammation is a medical issue and research in this area offers hope that as we learn more, the causes can lead to successful prevention and treatment.  In the meantime, Dr. Dan Rossignol and the faculty at the Medical Academy of Pediatric Special Needs (MAPS) are training medical professionals from around the world on biomedical treatments that can be used to prevent and treat developmental delays.  Many of these treatments focus on decreasing inflammation and improving the organ systems, like the gut, that manage the inflammatory process.  By addressing unbalanced microbes in the gut and reducing the impact of toxins, MAPS trained practitioners are able to decrease the excess excitement in the brain, improving social, language and cognitive potential in children diagnosed with autism.

Can research really change the future of autism in Georgia? You can help find out more here!

 

SPARK - Emory - Autism Research
SPARK – Emory – Autism Research


In Georgia, there are an estimated 1 in 64 children with an Autism Spectrum Disorder (ASD), and likely as many adults. While we know it is most important to provide appropriate support to address challenges and to build strengths today, the Emory Autism Center (EAC) is also committed to understanding the complex biology associated with autism to gain a better understanding of causes and treatments. Therefore, Emory is working to reach out to people with ASD and their families to be part of the SPARK study.

The goal of SPARK is to accelerate autism research. By building a community of tens of thousands of individuals with autism and their biological family members who provide behavioral and genetic data, SPARK will be the largest autism research study to date. We need your help to get the word out!

The easiest way for a family, or an adult with ASD, to start enrollment is to go online to www.sparkforautism.org/emory or to contact Mr. Jermel Wallace directly (Jermel.L.Wallace@emory.edu or 404-727-8350). We have brochures, business cards, postcards and a flowchart of the registration process and would be happy to get that to you.

We would appreciate it if you could share this information with your clients affected by ASD. Possibly, display a poster and information cards in your waiting room and directly give information to individuals and families affected by ASD at any age. We can provide more copies anytime. Just let us know. Also, we would appreciate the opportunity to come and tell you more about the study in person. Mr. Wallace will follow-up with a phone call in the next few weeks.




Parents of Children on the Autism Spectrum – please help with a new research project!

As you know at Patient Talk we are always very happy to help promote research into autism and ASD. A few days ago we were contacted by Elizabeth Hooks who is a doctoral intern studying School Psychology at Ball State University. Ms Hooks asked up to help her find parents of children on the spectrum to take part in a new project!

Hooks wrote “I am a doctoral intern studying school psychology at Ball State University and doing my internship at Kennedy Krieger. I was hoping you would be willing to post my dissertation recruitment flyer.

We are looking for kids with autism, ages 12-18, who have a 4th grade reading level. We are asking them to fill out a personality assessment form, which assesses for rates of anxiety and depression in neurotypical teens. We are hoping it can be used to accurately diagnose these conditions in teens with autism as well. We are offering a $15 itunes gift card and they will be entered into a raffle for 6 $100 visa gift cards.”

Ball State University - Autism Research
Ball State University – Autism Research

Liz Freeman Floyd, M.A., is a doctoral student in the School Psychology program at Ball State University. Her graduate training experience includes providing psychoeducational assessment and counseling therapy in both educational and clinical settings. Liz participated in the design and implementation of the Ball State Center for Autism Spectrum Disorder’s employment evaluation research study as a graduate research assistant and will intern with the Center during the upcoming academic year. Prior to entering graduate school, Liz served on the boards of directors of the national Autism Society, the Indiana Autism Coalition, and the Autism Society of Indiana. Following graduation she plans to provide assessment and counseling services to individuals and families living with autism spectrum disorder and other developmental differences.




Elizabeth Hooks, M.A., is a doctoral intern studying School Psychology at Ball State University. She is currently interning at the Pediatric Developmental Disorders Clinic and Neurobehavioral Outpatient Unit at the Kennedy Krieger Institute (KKI) and is working to gain licensure as a Board Certified Behavior Analyst at Ball State University as well. During her graduate training, Elizabeth gained experience working in several school districts throughout Indiana and worked as an early intervention specialist for children with Autism Spectrum Disorder and other developmental disabilities. Following graduation, Elizabeth plans on providing assessment and diagnostic services for families, and behavioral (ABA) therapy to families who have children and adolescents with developmental disabilities.

David E. McIntosh, Ph.D., is the David and Joanna Meeks Distinguished Professor of Special Education at Ball State University. The author of numerous scholarly publications, Dr. McIntosh is editor-in-chief of the peer-reviewed academic journal Psychology in the Schools. He was instrumental in the creation of Ball State’s Center for Autism Spectrum Disorder, an on-campus center founded to address critical gaps in services available to the autism community through research, training, and capacity-building activities. Dr. McIntosh’s research interests include the identification, assessment, and treatment of individuals on the autism spectrum. http://cms.bsu.edu/academics/collegesanddepartments/teachers/directory/deptofsped/mcintoshdavid

Does your child with Autism Spectrum Disorder have difficulties with feeding? Please help us with some research?

Autism and Feeding Research
Autism and Feeding Research

Does your child with Autism Spectrum Disorder have difficulties with feeding?

http://bit.ly/1QMPCp2

From The Irish Centre for Autism and Neurodevelopmental Research