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Wednesday, March 22, 2017

Cautionary Tale of 4-Year-Old Autistic Boy Rushed to ER After Treatment with Supplements

From The Washington Post

By Ariana Eunjung Cha
October 11, 2016

If you search for the words “autism” and “treatment” online, you'll find all kinds of suggestions outside of accepted medical practice for how to try to minimize or even cure the symptoms.

Some of those ideas can be dangerous.

Doctors recently described what happened to a 4-year-old boy who showed up in the emergency room after having been sick for three weeks. He was throwing up, had lost his appetite, was constipated and extremely thirsty, and had lost more than 6.5 pounds in two weeks.

The mother confessed a few days after his admission to the hospital that she had been giving him 12 different holistic supplements recommended by a naturopath for his autism. These included:

  • vitamin D
  • calcium magnesium citrate
  • cod liver oil
  • camel milk
  • silver
  • Biocare Lipozyme
  • archturus bromelain
  • zinc
  • trace minerals
  • Epsom bath salts
  • AFP Peptizyde
  • sodium chloride

The physicians who treated him found that he had toxic levels of vitamin D in his blood and had to transfer him to an endocrine unit for treatment. It took them two weeks, using various types of treatment, to get him stabilized.

“His parents were devastated that something they had given to their son with good intent had made him so unwell,” they wrote in a paper in the BMJ Case Reports.

The case study serves as yet another reminder that alternative medicine isn’t medicine and that parents should be cautious.

“Although families may report benefits with these treatments, there is no regulation of their use and, as our case demonstrates, there can be significant adverse events,” authors Catriona Boyd and Abdul Moodambail of the department of pediatrics at Barts Health in London wrote.

The doctors added that in the case of the 4-year-old boy, police are investigating the naturopath whom his parents consulted.

The Food and Drug Administration recently put out its own warning about alternative medicine and children. The FDA recommended that consumers stop using homeopathic teething tablets and gels as they may pose a risk to infants and children.

The FDA’s Janet Woodcock, director of the agency’s Center for Drug Evaluation and Research, said that parents should seek immediate medical care if a child experiences “seizures, difficulty breathing, lethargy, excessive sleepiness, muscle weakness, skin flushing, constipation, difficulty urinating or agitation” after using homeopathic teething tablets or gels.

The agency is conducting an investigation into the issue and urged people experiencing such problems to report them through its MedWatch Adverse Event Reporting program:

Requesting a Meeting to Review Your Child’s IEP

From the Center for Parent Information and Resources

March, 2017

En español | In Spanish

From our series of model letters…because sometimes you need to communicate with the school about your child’s education.

This short publication comes from a much longer Parent’s Guide that focuses on communicating with your child’s school via letter writing. There are times when you, as a parent, may want to communicate in writing with your child’s school about some problem or concern with your child’s education or well-being.

Because the Parent’s Guide is so long, we decided it would be more convenient to our readers if each of the letters discussed in the guide was also available separately, to make reading and printing individual letters easier.

This page presents a model letter or email you might write the school to request a meeting to review and/or revise your child’s IEP.


If your child is receiving special education services, he or she must have a written plan known as an Individualized Education Program (IEP). The IEP lists, among other things, annual goals for your child and the special education services that he or she will receive.

You are a member of the team that writes your child’s IEP. As an IEP team member, you can ask that your child’s IEP be reviewed and revised, if needed. This part of the Parent’s Guide looks at writing a letter to request that your child’s IEP be reviewed.

Why might I ask for a review of my child’s IEP?

Some reasons for requesting an IEP review include:

  • Your child has met one, or several, of the goals written in the IEP.
  • Your child does not seem to be making enough progress toward one, or several, of the goals written in IEP.
  • You feel your child needs more services or other services in order to make progress.
  • You feel that your child no longer needs a service he or she is currently receiving.
  • Your child has experienced a major change, such as illness, injury, or surgery.

General Letter-Writing Tips

When writing any business letter, it is important to keep it short and to the point.

First, start by asking yourself the following questions and state the answers in your letter:
  • Why am I writing?
  • What are my specific concerns?
  • What are my questions?
  • What would I like the person to do about this situation?
  • What sort of response do I want: a letter, a meeting, a phone call, or something else?

Each letter you write should include the following basic information:
  • Put the date on your letter.
  • Give your child’s full name and the name of your child’s main teacher or current class placement.
  • Say what you want, rather than what you don’t want. Keep it simple.
  • Give your address and a daytime phone number where you can be reached.
  • Always end your letter with a “thank you.”

What are some other tips to keep in mind?

You want to make a good impression so that the person reading your letter will understand your request and say “yes.” Remember, this person may not know you, your child, or your child’s situation. Keep the tone of your letter pleasant and businesslike. Give the facts without letting anger, frustration, blame, or other negative emotions creep in.

Some letter-writing tips include:
  • After you write your first draft, put the letter aside for a day or two. Then look at it again and revise it with fresh eyes.
  • Read your letter as though you are the person receiving it. Is your request clear? Have you included the important facts? Does your letter ramble on and on? Is it likely to offend, or is the tone businesslike?
  • Have someone else read your letter for you. Is your reason for writing clear? Can the reader tell what you are asking for? Would the reader say “yes” if he or she received this letter? Can your letter be improved?
  • Use spell check and grammar check on the computer. Or ask someone reliable to edit your letter before you send it.
  • Keep a copy for your records.

Model Letter

Today’s Date (include month, day, and year)

Your Name
Street Address
City, State, Zip Code
Daytime telephone number

Name of Your Child’s Teacher
Name of School
Street Address
City, State, Zip Code

Dear (Teacher’s name),

I am writing to request an IEP review meeting. I would like to discuss making some changes in (child’s name)’s IEP. I am concerned about (state your reasons, but don’t go into detail about the specific changes you want to make—save those for the meeting).

I would also like to have (names of specialists or other staff) attend. I think his/her/their ideas about the changes we may need to make will be valuable.

I can arrange to meet with you and the other members of the IEP team on (days) between (give a range of time, such as between 2:00 and 4:00). Please let me know what time would be best for you.

I look forward to hearing from you soon. My daytime telephone number is (give your phone number). Thank you for your help.


Your name

cc: specialists or other staff

Note: The “cc:” at the bottom of the letter means you are sending a copy of your letter to the people listed after the cc.

Would you like to read another letter?

Discussing a problem

Requesting a copy of your child’s records

Requesting an evaluation for special education services

Requesting an independent evaluation

Requesting a meeting to review your child’s Individualized Education Program (IEP)

Requesting a change in your child’s placement

Informing the school that you intend to place your child in a private school at public expense

Requesting prior written notice

Requesting mediation to resolve a conflict

Requesting a due process hearing to resolve a conflict

Filing a complaint with the State to resolve a conflict

Tuesday, March 21, 2017

Experts: 'Trumpcare' Places Autism, Disability Coverage in Jeopardy

From ABC News

By Gillian Mohney and Priya Raja
March 9, 2017

Researchers from the University of Pennsylvania and Johns Hopkins University say that proposed changes to the health care system under President Trump could have a profound effect on people with disabilities, according to an editorial published yesterday in the New England Journal of Medicine.

Of particular concern is how a proposed restructuring of Medicaid could affect Americans with autism and the people who care for them.

Medicaid is the largest health care payer for patients being treated for autism and other developmental disorders and could face an overhaul under proposals currently being debated in Congress. In 2013, Medicaid served approximately 250,000 children with autism, according to the editorial, titled "Care for Autism and Other Disabilities — A Future in Jeopardy."

Since 2014 states have been able to opt into expanded Medicaid coverage, which has allowed people with incomes below 138 percent of the poverty line to enroll in the program.

Under the American Health Care Act, also dubbed "Trumpcare," there would be major changes to Medicaid starting in 2020 that will move it away from an entitlement program that can receive open-ended federal funds to a block-grant fund where states would get a per-person amount of money.

“Medicaid is tremendously important in delivering care for those with disabilities,” said Colleen Barry, Ph.D, a co-author of the editorial and chair of the Department of Health Policy and Management at the Johns Hopkins Bloomberg School of Public Health.

"We sometimes think about Medicaid as primarily for low income women and children, but when you look at where the dollars go, they tend to go to individuals with disabilities.”

Barry and her co-author say that if Medicaid changes to a block-grant system families may have to bear more of their health care costs out-of-pocket, compromising their access to services essential in the treatment of these conditions.

"Kids with autism, we know, require a variety of different types of services to allow them to do well, and to improve well-being and the ability to live a healthy life, any many of those services are provided through the Medicaid program," Barry said.

Barry says that lower income patients and their families could be disproportionately impacted. The grants transfer more power and flexibility to the states over the care the program provides but usually result in an overall reduction in services, she told ABC News.

AARP, a group that advocates for senior citizens and other older Americans, said that the block grants could result in "overwhelming cost shifts to states, state taxpayers, and families."

"Individuals with disabilities of all ages and older adults rely on critical Medicaid services," AARP officials said in a statement on Tuesday.

Barry and her co-author say that if the coverage of essential health benefits are no longer required under Medicaid, more and more insurance plans will not offer coverage for habilitative and rehabilitative services, mental health services and behavioral therapies. Under the ACA, insurance plans are required to cover these benefits.

They also say that opening up insurance plans for purchase across state lines -- as President Trump and Republicans have advocated -- could affect options for families seeking insurance plans for children with autism.

Since 44 states require fully-insured plans to cover autism-specific behavioral therapies, Barry says that insurers could get around the mandate by offering out-of-state insurance in states where coverage is not mandated. State governments could also repeal these coverage mandates in order to lower premium costs, he said.

Postsecondary Educational Opportunities for Students with Special Education Needs

From the European Journal of Special Needs Education
via the Frank Porter Graham Child Development Institute

By Mary Ruth Coleman & Michael Shevlin
Guest Editors

March 12, 2017

From the introduction to Postsecondary Educational Opportunities for Students with Special Education Needs:

"The purpose of this special issue is to provide current information on higher educational opportunities and challenges for students with special educational needs.

To achieve this, we have gathered an outstanding set of articles and short reports that reflect some of the best thinking from around the world: exploring the strengths and needs of students with disabilities and examining the infrastructure (i.e. policies, practices and personnel preparation) required to support their success within higher education..."


Guest Editors' comments
Mary Ruth Coleman & Michael Shevlin

Inclusive Education in Higher Education: Challenges and Opportunities
by Anabel Moriña

Academic Self-Efficacy, Sense of Coherence, Hope and Tiredness Among College Students with Learning Disabilities
by Shiri Ben-Naim, Roni Laslo-Roth, Michal Einav, Hadar Biran & Malka Margalit

Functioning and Participation Problems of Students with ADHD in Higher Education:
Which Reasonable Accommodations Are Effective?

by Dorien Jansen, Katja Petry, Eva Ceulemans, Saskia Van Der Oord, Ilse Noens & Dieter Baeyens

Making the Transition to Post-Secondary Education: Opportunities and Challenges Experienced by Students with ASD in the Republic of Ireland
by Sheena Bell, Cristina Devecchi, Conor Mc Guckin & Michael Shevlin

Functioning and Participation Problems of Students with ASD in Higher Education:
Which Reasonable Accommodations Are Effective?

by Dorien Jansen, Katja Petry, Eva Ceulemans, Ilse Noens & Dieter Baeyens

Developing an Inclusive Learning Environment for Students with Visual Impairment in Higher Education: Progressive Mutual Accommodation and Learner Experiences in the UK
by Rachel Hewett, Graeme Douglas, Michael Mclinden & Sue Keil

Responding to the Needs of Students with Mental Health Difficulties in Higher Education:
An Irish Perspective

by Esther Murphy

Belonging to Higher Education: Inclusive Education for Students with Intellectual Disabilities
by Kristín Björnsdóttir

Re-Visiting the Role of Disability Coordinators: The Changing Needs of Disabled Students and Current Support Strategies from a UK University

by Mujde Koca-Atabey

Dual Powerpoint Presentation Approach for Students with Special Educational Needs and Note-Takers
by Nitin Naik

From the Voice of a “Socratic Gadfly”: A Call For More Academic Activism in the Researching of Disability in Postsecondary Education
by Jane Seale

  • Coleman, M. R., & Shevlin, M. (Eds.). (2017). Postsecondary educational opportunities for students with special education needs [Special issue]. European Journal of Special Needs Education, 32(1).

Monday, March 20, 2017

Why It's Time to Investigate the Overlap between Autism and ADHD

From The Guardian U.S. Edition

By Laurence O'Dwyer
November 17, 2016

The most influential psychiatric handbook prohibited a joint diagnosis of autism and ADHD until 2013. But the link could be significant.

Patients with symptoms of both autism and ADHD may respond poorly
to standard ADHD treatments or have increased side effects.

Until as late as 2013 a joint (or comorbid) diagnosis of autism and attention deficit hyperactivity disorder (ADHD) was not permitted by the most influential psychiatric handbook, the Diagnostic and Statistical Manual of Mental Disorders (DSM).

The DSM is an essential tool in psychiatry as it allows clinicians and researchers to use a standard framework for classifying mental disorders. Health insurance companies and drug regulation agencies also use the DSM, so its definition of what does or doesn’t constitute a particular disorder can have far-reaching consequences.

One of the reasons for the prohibition of a comorbid diagnosis of autism and ADHD was that the severity of autism placed it above ADHD in the diagnostic hierarchy, so the inattention that is normally present in autism did not seem to merit an additional diagnosis.

Nevertheless, that was an odd state of affairs, as any clinician working in the field would be able to quote studies that point to anything from 30% to 80% of patients with autism also having ADHD. More problematic still is the fact that patients with both sets of symptoms may respond poorly to standard ADHD treatments or have increased side effects.

The fifth edition of the DSM opened the way for a more detailed look at this overlap, and just a year after the new guidelines were adopted, a consortium (which I am a part of) at the Radboud University in Nijmegen (Netherlands) called NeuroIMAGE published a paper which showed that autistic traits in ADHD participants could be predicted by complex interactions between grey and white matter volumes in the brain.

Structures of the brains of participants in the NeuroIMAGE
study. The caudate nucleus, which was found to be able to
predict levels of autistic traits in ADHD participants, is
shown in red. Photograph: Laurence O'Dwyer et al
A more general finding from that work was that autistic traits were significantly raised in ADHD participants, a curious result given that a diagnosis of clinical autism was an exclusion criterion for participation in the study. Raised levels of autistic traits in ADHD participants in the NeuroIMAGE study reflect the fact that autism is a spectrum disorder distributed throughout the entire population.

Interestingly, research from last year shows that autistic traits are also much higher among scientists compared to the general population.

A paper (which I co-authored) published at the begining of this month in the journal Plos One, looking at MRI scans from over 500 participants in the NeuroIMAGE project has moved on to examine in detail the brain structures involved in the overlap of ADHD and autism. One structure in particular, called the caudate nucleus, was able to predict the level of autistic traits in ADHD, but similar to the earlier paper, a complex interaction was shown to be at work with another structure, the globus pallidus, also influencing results.

Both of these structures are located in a part of the forebrain called the striatum that operates as a monitoring system for rewards, with the caudate guiding the selection of goals and the globus pallidus updating the reward value depending on the outcome of an action. With this kind of monitoring, the striatum plays a key role in planning, decision-making and motivation.

The results showed that autistic traits were highest when there was a coupling of higher caudate volume with lower globus pallidus volume. The statistical tools (called mixed-effects models) used in the paper were devised and optimised by a zoologist who has used similar models to study the transfer of information in flotillas of vultures as they optimise their search space while scavenging for food .

The latest findings add to a growing body of evidence that suggests that problems in the reward circuits of the striatum may lead to diminished motivation to attend to social stimuli, such as a smile or a frown or a voice. An earlier study in autistic children found a striking pattern of under-connectivity between voice-selective areas of the temporal lobe and nodes of the reward pathway suggesting that autistic children may not find voices inherently interesting.

The first account of autism in the modern era, published by Leo Kanner in 1943, noted that one patient “did not register any change of expression when spoken to”. Kanner’s seminal paper contains many poignant descriptions of “social-blindness”, such as the case history of Elaine C, a seven-year-old girl, who did not look at a face when spoken to, was rarely communicative, never played with children but instead moved among them “like a strange being, as one moves between the pieces of furniture in a room.”

A consistent thread in autism research has been the inconsistency of results. Some groups have shown a larger caudate in autism while others have shown the opposite. Small sample sizes are partly to blame, but another problem is that levels of ADHD in autism are often ignored.

This is a serious oversight, as the degree of ADHD present in autism can have a large impact on the results. The latest publication in Plos One goes some way to addressing these problems by drawing on a sample size of over 500 participants and more importantly by looking at the subtle hinterland between the two disorders rather than separating them into binary units.

There are many debates about the usefulness of the DSM since it first appeared in 1952. The first edition contained 130 pages and 106 diagnoses. Today’s edition runs to over 800 pages with almost 400 diagnoses, leading to criticism from Dr. Robert Spitzer, who was once the chairperson of a DSM task force, that the handbook has led to the medicalization of 20-30% of the population who may not have any serious mental health problems.

Outside of this debate, it cannot be denied that the DSM has a large impact, positive and negative, on the way research is conducted but at least some of the changes to the fifth edition may lead to better clinical management of patients with both autism and ADHD.

From a research point of view, the fifth edition of the DSM will certainly provide a better scientific framework for studying the overlap of these two disorders in more detail.

Best Medications for Kids with Anxiety

From the Child Mind Institute

John T. Walkup, M.D.
March 18, 2017

Antidepressants trump all others as the most effective evidence-based choice.

We see a lot of the wrong medications being given to anxious kids because people who are treating them don’t really understand what these children are experiencing, and they don’t know what the evidence-based treatments are.

Anxious kids have a hard time paying attention. It’s not because they have attention deficit, it’s because their heads are full of worry. But their parents and teachers may only notice that they’re having trouble paying attention, and so they get misdiagnosed as having the inattentive subtype of ADHD and put on stimulants.

Stimulants will help anybody feel a little bit more attentive, so they will help these kids concentrate better, but they might also have more stomachaches, and often they’re not happy, they’re not comfortable. The stimulants may actually make the anxiety a little bit worse.

Plus, anxious kids have trouble sleeping, and sometimes the stimulants makes sleeping even harder.


Another type of medicine some practitioners use, because they’re comfortable with it, is clonidine or guanfacine. These are alpha-two agonists; they calm, they lower arousal levels, but they don’t really treat anxiety.

The third group of medicines that we see people using are, believe it or not, antipsychotics. With the scare a few years ago about suicidal behavior on antidepressants, people moved away from the antidepressants and now they’re treating anxious kids with antipsychotics. Now, in someone’s mind that may be safe, but from an evidence-based point of view it’s terrible care.

The clear medications of choice for treating anxiety in children are the serotonin reuptake inhibitors, the antidepressants. Study after study shows those are the medicines that are effective, and they can be extremely effective.

With the right assessment, with the right youngster, the use of antidepressants for anxiety can be transformative. And it can happen relatively quickly; in our studies we often see kids better by the first week or two of treatment. They’re not completely well but they’re moving in the right direction, and that kind of response early on generates confidence in the anxiety treatment, makes moms and dads feel a little bit better and makes the kids feel pretty good.

The other evidence-based treatment for anxiety is cognitive behavioral therapy and it’s important to understand that in our big study, where we compared combination treatment of cognitive behavioral therapy and medication with either one of those treatments alone, that the combination beat them all handily. So when you’re thinking about the very best treatment you’ve got to be thinking in terms of medication plus a psychological intervention.


Finally, the benzodiazepines are the other treatment that I commonly see being used in kids with anxiety disorders. They are short-term, they can be extremely effective in reducing intense anxiety in youngsters who are really suffering and in distress. But the data supporting their long-term usefulness is very thin, even in adults.

There are kids who are so anxious and uncomfortable and are on the verge of school failure or disruption of the home or something like that where you just really need an acute way to bring down everybody’s anxiety, and in those cases the benzodiazepines can be very helpful.

But sometimes they’re a little too helpful, because people begin to like how they feel on them and don’t really shift focus from those medicines onto the antidepressants, which really offer long-term, durable anxiety reduction without really any side effects or problems.

With benzodiazepines you can actually develop tolerance to them, so they might work the first month or two, but to keep them working in the long haul you often have to increase the dose. They manage anxiety, they offer anxiety relief, but they don’t really seem to have that kind of almost curative property that the antidepressants seem to have.

John T. Walkup, M.D. is a leader in the treatment of anxiety in children and adolescents and chief of the department of child and adolescent psychiatry at New York-Presbyterian Hospital and the Weill Cornell Medical Center.

Sunday, March 19, 2017

Teachers Must Ditch 'Neuromyth' of Learning Styles, Say Scientists

From The Guardian U.S. Edition

By Sally Weale
March 12, 2017

Teaching children according to their individual “learning style” does not achieve better results and should be ditched by schools in favour of evidence-based practice, according to leading scientists.

The academics say the learning style approach is ineffective,
a waste of resources and potentially even damaging.

Thirty eminent academics from the worlds of neuroscience, education and psychology have signed a letter to the Guardian voicing their concern about the popularity of the learning style approach among some teachers.

They say it is ineffective, a waste of resources and potentially even damaging as it can lead to a fixed approach that could impair pupils’ potential to apply or adapt themselves to different ways of learning.

The group opposes the theory that learning is more effective if pupils are taught using an individual approach identified as their personal “learning style”. Some pupils, for example, are identified as having a “listening” style and could therefore be taught with storytelling and discussion rather than written exercises.

The letter describes that approach as “one of a number of common neuromyths that do nothing to enhance education”. It is signed by Steven Pinker, Johnstone family professor of psychology at Harvard University; Dorothy Bishop, professor of developmental neuropsychology at the University of Oxford; and leading neuroscientist Professor Uta Frith of University College London among others.

School leaders say the enthusiasm for learning styles in schools has faded, but research in 2012 among teachers in the UK and Netherlands found that 80% believed individuals learned better when they received information in their preferred learning style. In 2013, research by the Wellcome Trust found that 76% of teachers had used learning styles in their teaching.

As part of international Brain Awareness Week, which starts on Monday, scientists want to raise awareness of these commonly held beliefs about how to improve learning, which are supposedly based on research but not backed up with scientific evidence.

As part of the campaign, an organisation called Speakezee is sending neuroscientists into schools to raise awareness among teachers and pupils of the latest research based on established scientific findings, and to flag up the shortcomings of the learning style approach.

“Teachers need to be armed with up-to-date evidence of what has been shown to be effective so that schools are not wasting time or money on unsubstantiated practices that do not help students,” the letter says.

“It is hard to establish the cost to the education system of using learning styles. Some schools have it as part of their teaching ethos whereas others bring in external consultants or send teachers on training courses.

“Aside from the cost in terms of time and money, one concern is that learning styles leads to belief that individual students are unable to learn because the material is inappropriate.”

It continues: “The brain is essential for learning, but learning styles is just one of a number of common neuromyths that do nothing to enhance education.”

The letter, organised by Professor Bruce Hood, chair of developmental psychology in society at the University of Bristol, says most people believe they have a preferred learning style – either visual, auditory or kinesthetic – and teaching using a variety of these styles can be engaging.

“However the claim that students will perform better when the teaching is matched to their preferred sensory modality (learning style) is simply not supported by the science and of questionable value,” he said.

According to Hood, a recent poll of more than 100 head teachers of independent schools found over 85% believed in learning styles, and 66% used them in their schools with many sending teachers on courses and 6% paying for external consultants. Amounts spent ranged from nothing to over £30,000 per year, he said.

Geoff Barton, headteacher of King Edward VI school in Bury St Edmunds, Suffolk, who is soon to take over as general secretary of the Association of School and College Leaders, said he hoped the age of neuromyths was over.

“I think the fad about learning styles faded long ago, and I would be surprised if many schools continued to subscribe to the approach. That said, the notion of making teaching and learning more varied in classrooms is helpful and likely to motivate a wider range of students,” he said.

“Modern neuroscience – rather than some quick-fix version of it – should help teachers and students to develop real learning, real progress and real success.”

The Educational Endowment Foundation, an independent grant-making charity, has also documented its concerns about a learning styles approach.

It said: “There is very limited evidence for any consistent set of learning ‘styles’ that can be used reliably to identify genuine differences in the learning needs of young people, and evidence suggests that it is unhelpful to assign learners to groups or categories on the basis of a supposed learning style.”

The Department for Education declined to provide a formal comment on learning styles, but a spokeswoman said it was up to teachers to decide what they wanted to use in their classrooms.