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Saturday, December 15, 2018

10 Key Procedural Safeguards in IDEA

From Understood

By Andrew M.I. Lee, J.D.
Reviewed by Melody Musgrove, Ed.D.

December 12, 2018

At a Glance
  • Under the Individuals with Disabilities Education Act (IDEA), you and your child have legal protections during the evaluation and IEP process.
  • These protections are called procedural safeguards.
  • The school must provide a written explanation of your rights under IDEA.

Does your child have an IEP? Or is your child being evaluated for special education services? If so, it’s important to know that you and your child have legal rights and protections during this process. The Individuals with Disabilities Education Act (IDEA) offers these protections. They’re called procedural safeguards.

Procedural safeguards don’t spell out what services or accommodations should be in an IEP. Instead, they describe the ground rules for how you’ll work with the school.

Here are 10 important procedural safeguards and what they mean for you and your child.

1.) Procedural Safeguards Notice: The school must provide you with a written explanation of your rights under both IDEA and your state’s laws. You’ll get this as a printed procedural safeguards notice. You can also ask for a verbal explanation.

2.) Parent Participation: You have a legal right to participate in meetings about your child’s education, including IEP meetings. You can even call an IEP team meeting at any time. Learn more about your role on the IEP team.

3.) Access to Educational Records: You have the right to see and get an explanation of your child’s school records. You can also ask for corrections. These rights are protected by IDEA and the Family Educational Rights and Privacy Act (FERPA).

4.) Confidentiality of Information: The school must protect your child’s confidentiality. This includes personal information, such as your child’s name, address, social security number and other personal details. There are some exceptions, though. FERPA outlines these.

5.) Informed Consent (or Parental Consent): Before evaluating your child or providing special education services for the first time, the school must inform you of what’s involved. You have to give your permission in writing before the school can move forward. Learn more about informed consent.

6.) Prior Written Notice: The school must give you written notice before it changes your child’s special education experience. This includes when the school wants to add or deny services. It must tell you what it proposes to do and why. Get more details on how prior written notice works.

7.) Understandable Language: When the school provides written notice, it must use language that’s understandable to the general public. The notice must also be in your native language (this includes Braille).

8.) Independent Educational Evaluation (IEE): If you disagree with the school’s evaluation results, you have the right to get an IEE. An IEE is an evaluation of your child’s skills and needs by someone who’s not a school employee. The school must consider the results of the IEE. However, the school isn’t required to accept the findings. Learn more about IEEs.

9.) “Stay Put” Rights: Do you disagree with a proposed change to your child’s IEP services or placement? The “stay put” protection keeps your child’s current IEP in place while you and the school work things out. But you have to act quickly. Read more about “stay put” rights.

10.) Dispute Resolution Options: You have the right to disagree with the school about what’s best for your child. If you have a disagreement, IDEA provides you several dispute resolution options.

You can negotiate and talk things out with the school. Or you can use mediation, where a neutral third party helps you and the school try to resolve a dispute. You also have the right to due process, which starts with a written complaint and ends with a decision after a hearing.

Finally, you can file a complaint with your state if the school is violating IDEA. And you can file a complaint with the Office for Civil Rights for the U.S. Department of Education if you believe there’s discrimination against your child.

Learn more about dispute resolution options. Keep in mind that you may want to talk with an advocate or attorney when considering dispute resolution. Learn how to find a special education advocate.

Keep in mind that the rights listed above aren’t the only procedural safeguards in IDEA. You also may have more protections depending on your state’s law. Be sure to look closely at the school’s procedural safeguards notice for more information. You can also reach out to your state’s Parent Training and Information Center (PTI) for more information.

Learn more about what an IEP can provide. You can also read up on IDEA discipline protections for kids.

Key Takeaways

  • Procedural safeguards don’t spell out what should be in an IEP, but rather the ground rules of how you interact with the school.
  • One of the most important procedural safeguards is the right to participate in your child’s education.
  • If you disagree with a school’s decision, you have several dispute resolution options, including due process.

These Productions are Designed for People With Autism

From WBUR 90.9 FM Boston

By Jenn Stanley
December 13, 2018

Michael Gravante loves theater. The high school senior has been acting in local performances since he was in first grade and he plans pursue a theater major when he goes to college next year. His mother, Elaine Gravante, describes him as a walking, talking Broadway encyclopedia.

But Michael’s autism spectrum disorder makes some theater experiences inaccessible to him. He has a hard time coping with sudden changes, disturbing images and unexpected elements.

“I like to know what happens before I see it, that’s why before I see a show I always try to read the synopsis first,” Michael says.

Elaine says that while her family loves going to the theater together, she always worries about potential setbacks, which can be hard to recover from.

“We’ve been to one show where there was no disclaimer on something that was going to happen and it completely knocked the socks off of Michael.”

The CDC estimates that 1 in 59 children has autism spectrum disorder, which can cause a broad range of challenges with social skills, repetitive behaviors, speech and nonverbal communication. It also means that certain sensory experiences, like a night at the theater, can be overwhelming.

Sensory-friendly productions, which alter some technical and dramatic elements of a performance, are a way for neurodiverse communities to access theater.

Greater Boston Stage Company in Stoneham is preparing for its first sensory-friendly production for people with autism spectrum disorder and other sensory and cognitive needs. Dori Robinson, the theater’s education director, works with the cast and crew to tone down the lighting and sound design to make their show, "Tiny Tim’s Christmas Carol," more inviting to a neurodiverse audience.

John Pagliarulo and Bridgette Hayes in Greater Boston Stage Company's
"Tiny Tim's Christmas Carol" (Courtesy Greater Boston Stage Company)

Sensory-friendly productions are more relaxed. The staff warns the crowd before surprising or scary moments, and audience members are free to talk, walk around, and enter and exit the theater as needed.

“I think of it as the peaks and valleys,” Robinson says. “Taking those dramatic moments and bringing them more to a middle level so that the audience can still have that same performance. We’re not changing the words; we’re not changing what the actors are doing. They’re still experiencing it, just with slightly less dramatic elements so they can be a part of the show.”

Robinson recently participated in the Mass Cultural Council’s Universal Participation, or UP Initiative, which helps arts organizations become more inclusive and accessible. Part of the training focuses on these relaxed performances, which officially began in the United States about 10 years ago, starting on Broadway and spreading to theaters throughout the country.

Locally, Greater Boston Stage Company is not the first to offer these shows; Wheelock Family Theatre, The American Repertory Theater and SpeakEasy Stage have all offered sensory-friendly performances. Emerson Stage held two sensory-friendly productions of “Flor and Ulysses” this fall.

The UP Initiative’s program manager, Charles Baldwin, says it’s important for theaters to consider making changes across the board, not just on nights where the show is designated as “sensory-friendly.”

“When I was at Wheelock Family Theatre we did a couple of relaxed performances but soon discovered the audience we hoped to reach was already coming to shows and already felt welcome,” says Baldwin, who was the director of marketing and operations for Wheelock Family Theatre for nearly 15 years. “Thus, some features, like fidget toys and quiet spaces and ‘know before you go’ info were made available at all performances.”

Bridgette Hayes and Antonia Turilli in Greater Boston Stage Company's
"Tiny Tim's Christmas Carol" (Courtesy Greater Boston Stage Company)

Baldwin says that audience development is only one piece of the puzzle, and wants theaters to take a long view of their relationship with the communities they serve by making their spaces more generally accessible.

Robinson agrees. As director of education, her primary role is working with the theater’s education program, the Young Company.

“Four years ago when I came in, I noticed that we have students with all different abilities and all different backgrounds and I said, ‘Wow, are we doing our best work for everyone here?’ ”

Robinson brought in an inclusion specialist, Erin Ronder Neves, to better serve all of their students. She trains the staff and creates lesson plans for students who are neurodiverse and need some adjustments to the typical program. She says that communication and feedback are key to their success.

“We want to hear from families how they can be successful in our space so we can accommodate, modify, and adapt the space to meet those needs,” Neves says.

Michael Gravante has participated in Greater Boston Stage’s Young Company since 2014. His mother says that communication between the staff and her family has been key to his success. For Michael, these changes have meant that he can come to the theater and be his authentic self.

“When I first started here I didn’t really see anybody else like me, because I’m on the autism spectrum. But now with the sensory-friendly performances, I feel like the theater is going to keep changing,” Michael says. “People who are neurodiverse deserve to see a show and not feel uncomfortable in any way.” He now hopes to pursue a theater major when he goes to college next year.

Elaine says that having a theater space where Michael can thrive as both an audience member and a performer has meant the world to her family.

“Theater has saved him; theater has saved us. It has given him a purpose. It has given him a love, and he has found a place that he can call home and he can feel comfortable.”

"Tiny Tim’s Christmas Carol" runs through December 23. The sensory friendly production takes place on Saturday, December 15, at 2 p.m.

Friday, December 14, 2018

Strengths of the Dyslexic Mind

From Commonwealth Learning Center

By Deb Morris, F/AOGPE
December 12, 2018

“The single most important implication of research in dyslexia is not ensuring that we don’t derail the development of a future Leonardo or Edison; it is making sure that we do not miss the potential of any child. Not all children with dyslexia have extraordinary talents, but each of them has a unique potential that often goes unrealized because we don’t know how to tap it.”
—Maryanne Wolf, Proust and the Squid (1)

Too often we focus solely on remediation for students with dyslexia; while that’s critical, it also is important to recognize the many strengths that individuals with dyslexia possess.

Most people who live in the world of dyslexia are familiar with Richard Branson, the founder of Virgin Enterprises, who by the age of 50 had the largest private group of companies in Europe.

Branson’s creativity, ability to see the big picture, and strong oral communication skills, like so many others with dyslexia, did not serve him in the text-driven academic world—he dropped out at the age of 16—but have made him wildly successful as an entrepreneur whose goal is to identify untapped markets that lead to high revenue.

Although Branson is experiencing outrageous success, he is not alone in the entrepreneurial world: approximately 35% of entrepreneurs are dyslexic. (2) However, people with dyslexia can be equally successful in the academic world, especially when they have a passion for the subject matter.

Dr. Maggie Aderin-Pocock‘s strong reasoning skills and ability to understand abstract ideas lead her first to study physics, and later to work on the Gemini Telescope in Chile, where she managed a team of seventeen people building a spectrograph for the telescope. “I remember the first time I was in a class and the teacher asked a question—it was a very simple question—‘If you take a liter of water and one liter of water weighs 1 kilogram, how much will 1 cubic centimeter weigh?’

I sat there in the class, and I put up my hand. It was quite obvious that it was 1 gram. I looked around, and no one else had their hand up, so my gut reaction was, ‘Well, you’ve got to be wrong.’ I was going to put my hand down, and I thought, ‘No, wing it. What the heck.’ And I was right. I couldn’t believe that dumb Maggie in the remedial class sitting at the back could get the question right." (3)

This is true for Dr. Beryl Benacerraf, whose gift for seeing patterns, connections and similarities that others don’t make her an expert in the field of radiology—specifically in the area of fetal ultrasonography.

“It’s a pattern recognition that’s incredibly acute,” she explains. “Because of dyslexia, my brain works differently, and I can see these patterns. I do have a gift that other people don’t have, and I will always stay ahead of the crowd and see more in an image than other people. You can’t overcome it; you can work around it and make it work for you, but it never goes away. That’s probably a good thing, because if dyslexia went away, then the other gifts would go away, too.” (4)

Economists, artists, educators, athletes, medical professionals, scientists, and performers are just a sampling of the career paths populated by those with dyslexia. Certainly, dyslexia can make traditional education challenging, but it is a learning difference accompanied by strengths, as well. With intervention and guidance, we can help students reach their full potential.


(1) Wolf, Maryanne. (2007) Proust and the Squid. New York: Harper Collins.

(2) Logan, Julie. (2009) Dyslexic Entrepreneurs: The Incidence; Their Coping Strategies and Their Business Skills. Retrieved from Cass Knowledge.

(3,4) The Yale Center for Dyslexia & Creativity.

Part II - More Fruit of the Poisonous Tree: “Treating” Autism and the So-Called Kinder, Gentler ABA

From The Nova Scotia Advocate

By Alex Kronstein
July 23, 2018

Halifax – In my previous article, I discussed the links between Applied Behavioral Analysis (ABA) and gay conversion therapy.

Today I want to discuss the so-called “modern” ABA, and how it is also concerning to many people and organizations.

EIBI in Nova Scotia

Nova Scotia’s Early Intensive Behavioural Intervention program is available to all preschool children diagnosed with autism. Some families choose to defer school entry for their children, because once they are in school they’re no longer eligible for EIBI.

EIBI in Nova Scotia primarily uses Pivotal Response Treatment (PRT), a “naturalistic” form of ABA pioneered by psychologists Drs. Robert and Lynn Koegel. As described by the Department of Health and Wellness,

“PRT is a scientifically validated treatment that focuses on teaching children skills using both motivational strategies and the principles of applied behaviour analysis (ABA). The main goals of treatment are to facilitate development of the children’s communication, play and other functional skills.

These skills are taught through the systematic use of learning (motivational and ABA) principles, beginning at a developmental level appropriate for each individual child. Treatment focuses on ‘pivotal’ or fundamental areas (e.g., motivation) that result in widespread gains in skill development.”

Well, that may sound good on the face of it, but I suggest you read some comments by the founders of PRT, the Koegels.

Lynn Koegel co-wrote a book called “Overcoming Autism: Finding the Answers, Strategies, and Hope that Can Transform a Child’s Life”. The book was first published in 2005, and a second edition in 2014.

Some chapter titles include:
  • Diagnosis: Surviving the Worst News You’ll Ever Get
  • Battling Fears and Fixations: Bringing Your Child Back to the Real World
  • Family Life: Fighting Your Way Back to Normalcy

I was told that the book is frequently requested by parents whose kids are in the EIBI program.

For the record, some have said that they loathe the title, but still.

What do the Koegels really think?

If you want to know what the Koegels really think, take a look at this interview with them from around 2006, when the book often cited in Nova Scotia’s EIBI literature was published. Here are some of the most egregious quotes, along with my comments.

“Children often hate having to perform drill practices involved with other autism treatments, they feel like they are being forced to do something they don’t enjoy and they react to this by causing a scene to get out of treatment. The child will throw tantrums and resist therapy.

In contrast, children enjoy PRT and look forward to therapy, no tantrums. Parents love PRT because their children do, they have less to worry about, and this leads to a decrease in their stress level.”

This is a major area of concern for many autistic people. PRT claims to be child-led, and that kids look forward to therapy sessions. But the idea that the child has a choice is inaccurate. PRT is still fundamentally compliance-based, and it should be asked if the child really knows they have a choice if they comply with the therapist’s requests.

And, even if they did have a choice, it’s entirely possible that they’ll still do what they think the adult wants them to do.

Also, on this idea that the kids have fun in PRT sessions (or any kind of ABA)….it IS possible to have fun while being coerced. People, especially kids, can be reinforced to look happy, but it doesn’t mean they really are happy.

“The speed of recovery with PRT is much faster than with other forms of therapy.”

“Recovery” from Autism. A Perfect Example of Their Thinking

“After discovering PRT and two years of this therapy at the Koegel Autism Center, Lauri was told by her son’s developmental pediatrician that he could no longer diagnose him, now age 4½, as autistic. Today, his teachers have no idea that he was ever diagnosed with autism.”

So the doctor considers the boy “cured”? Is that what we’re supposed to read into this?

“‘Peter’ (name changed to protect privacy) was receiving treatment during his every waking hour. He has gone from being a completely non-verbal, distant, difficult, and tantrumming child, with troubling stims and perseverations to a chatty, agreeable, empathetic and gregarious, well-behaved young boy.”

Autistic children do not need “treatment” 24/7! Once again, there’s more than one way to communicate…..don’t place so much emphasis on oral speech! And why is it so important to be “gregarious”…..lots of people are introverts, autistic or not.

And I’m not at all surprised that PRT aims to quash stimming….that’s a key element of all forms of ABA. But stimming is so important for lots of autistics….watch this video from Amythest Schaber for an explanation. (Also, one of the chapters in Overcoming Autism is all about ways to stop stimming.)

And worst of all...

“It is considered a behavior intervention with similarities to the Lovaas method/ABA.”

That pretty much says it all, doesn’t it?

It should also be noted that Robert Koegel was Ivar Lovaas’ lead researcher at UCLA.

So this is what we have in Nova Scotia. And no one ever questions it.

Fruit of the Poisonous Tree and the New Resistance in Canada

So as you can see, ABA by any other name is still ABA. There really is no such thing as “modern ABA”. They may not be so blatant about “building the person” today, but the idea that autistic ways of being are wrong is nonetheless still the foundation that ALL forms of ABA are built upon.

No matter how “kinder and gentler” than the Lovaas method it may be, it is still fruit of the poisonous tree.

And it’s not just publicly funded in Nova Scotia….ABA and IBI is publicly funded to a certain extent in every province and territory in Canada. Furthermore, some highly ableist and irresponsible people would like to see ABA funded at the federal level.

But autistic Canadians are fighting back.

One of the most prominent groups is A4A Ontario. Formed in early 2017, their main goal is to see the Ontario Autism Plan restructured so as to have meaningful consultation with autistic people and others who have been left out of the process. In particular, they want to see ABA/IBI phased out completely, and replaced with more respectful supports for autistic children.

Another organization with similar goals is Canadian Autistics United. CAU is an independent Canadian-run organization run by and for autistic people, having begun when the Vancouver and Winnipeg chapters of the Autistic Self-Advocacy Network were rebranded. They are interested in expanding their organization with more chapters across the country.

(Full disclosure: I am a supporter of both organizations.)

In my next article, I’ll talk about some ideas to use instead of ABA or EIBI. But I’ll close out this one with some words from noted autistic activist Lei Wiley-Mydske.

"So many people tell me their kids “love” ABA, but then do not understand why their child’s anxiety and 'aggressive behaviours' get worse after they start ABA. People refuse to see the connection because they are told that the aggression and anxiety are part of being Autistic, not part of how we react to what people do to us."
-- Lei Wiley-Mydske

Thursday, December 13, 2018

Infections During Childhood Increase the Risk of Mental Disorders

From Aarhus University
via ScienceDaily

December 5, 2018

A new study from iPSYCH shows that the infections children contract during their childhood are linked to an increase in the risk of mental disorders during childhood and adolescence. This knowledge expands our understanding of the role of the immune system in the development of mental disorders.

High temperatures, sore throats and infections during childhood can increase the risk of also suffering from a mental disorder as a child or adolescent. This is shown by the first study of its kind to follow all children born in Denmark between 1 January 1995 and 30 June 2012. The researchers have looked at all infections that have been treated from birth and also at the subsequent risk of childhood and adolescent psychiatric disorders.

"Hospital admissions with infections are particularly associated with an increased risk of mental disorders, but so too are less severe infections that are treated with medicine from the patient's own general practitioner," says Ole Köhler-Forsberg from Aarhus University and Aarhus University Hospital's Psychoses Research Unit. He is one of the researchers behind the study.

The study showed that children who had been hospitalised with an infection had an 84 per cent increased risk of suffering a mental disorder and a 42 per cent increased risk of being prescribed medicine to treat mental disorders.

Furthermore, the risk for a range of specific mental disorders was also higher, including psychotic disorders, OCD, tics, personality disorders, autism and ADHD.

"This knowledge increases our understanding of the fact that there is a close connection between body and brain and that the immune system can play a role in the development of mental disorders. Once again research indicates that physical and mental health are closely connected," says Ole Köhler-Forsberg.

Highest Risk Following an Infection
The study has just been published in JAMA Psychiatry and is a part of the Danish iPSYCH psychiatry project.

"We also found that the risk of mental disorders is highest right after the infection, which supports the infection to some extent playing a role in the development of the mental disorder," says Ole Köhler-Forsberg.

It therefore appears that infections and the inflammatory reaction that follows afterwards can affect the brain and be part of the process of developing severe mental disorders. This can, however, also be explained by other causes, such as some people having a genetically higher risk of suffering more infections and mental disorders.

The new knowledge could have importance for further studies of the immune system and the importance of infections for the development of a wide range of childhood and adolescent mental disorders for which the researchers have shown a correlation. This is the assessment of senior researcher on the study, Research Director Michael Eriksen Benrós from the Psychiatric Centre Copenhagen at Copenhagen University hospital.
"The temporal correlations between the infection and the mental diagnoses were particularly notable, as we observed that the risk of a newly occurring mental disorder was increased by 5.66 times in the first three months after contact with a hospital due to an infection and were also increased more than twofold within the first year," he explains.
Michael Eriksen Benrós stresses that the study can in the long term lead to increased focus on the immune system and how infections play a role in childhood and adolescent mental disorders.

"It can have a consequence for treatment and the new knowledge can be used in making the diagnosis when new psychiatric symptoms occur in a young person. But first and foremost it corroborates our increasing understanding of how closely the body and brain are connected," he says.

Journal Reference
  • Ole Köhler-Forsberg, Liselotte Petersen, Christiane Gasse, Preben B. Mortensen, Soren Dalsgaard, Robert H. Yolken, Ole Mors, Michael E. Benros. A Nationwide Study in Denmark of the Association Between Treated Infections and the Subsequent Risk of Treated Mental Disorders in Children and Adolescents. JAMA Psychiatry, 2018; DOI: 10.1001/jamapsychiatry.2018.3428

Wednesday, December 12, 2018

Interview - Peter Hotez: ‘What Happens When the Anti-Vaccine Movement Moves into India?’

From The Guardian (U.S. Edition)

By Andrew Anthony
December 9, 2018

The American scientist, whose new book explains why vaccines didn’t cause his daughter’s autism, on why conspiracy theorists need to be challenged.

Peter Hotez at home in Texas with his daughter, Rachel,
whose autism inspired his book. Photograph: Scott Dalton

Peter Hotez is dean of the National School of Tropical Medicine at Baylor College of Medicine in Houston, Texas. He has worked on developing vaccines for hookworm and schistosomiasis, and is a vocal opponent of the anti-vaccine movement.

His daughter Rachel is autistic and he has written a book, Vaccines Did Not Cause Rachel’s Autism, in which he describes her condition and tackles the newly resurgent anti-vaccine movement.

Why did you decide to write this book through the prism of your own child?

Well, I felt called to do it. I’ve written books about neglected tropical diseases, and here I was seeing these terrible things happening in Europe and the US, and if I didn’t do it – a vaccine scientist, paediatrician and autism dad – who else would?

You cite Andrew Wakefield, the discredited British gastroenterologist, as the founder of the modern anti-vaccine movement. What kind of responsibility does the Lancet bear for publishing his erroneous report and disseminating what the BMJ called an “elaborate fraud”?

Ultimately the Lancet did the right thing in retracting the paper. It’s unfortunate that it took 12 years for that retraction. But I think it’s important to mention that Wakefield is not the only individual who’s alleging vaccines cause autism. So this whole movement may have started in 1998, but it has grown so much beyond him.

Cases of measles reached a 13-year high in 2008. What’s the situation today?

I can bring up the numbers of the European centres for disease control. You have around 50,000 cases of measles in Europe in 2018. So it’s very concerning. There have been 1,019 cases in the UK between October 2017 and September 2018.

Is there an established mortality rate for measles?

There is, but it varies depending on underlying nutrition. But remember, it’s not just mortality; there’s also permanent injury due to measles encephalitis, measles pneumonia, hearing loss, affected vision… The overall picture of measles goes beyond the fact that children can die.

But the anti-vaccine movement says the threat from measles is overstated.

Exactly. They actually mock me. There are memes about me. They call me the boy who cried wolf. They claim I’m exaggerating measles. But if you look at it historically, after smallpox was eradicated in the late 1970s, measles became the leading killer of children in the world: two-and-a-half million children died annually of measles.

Now, through aggressive vaccination programmes, we’ve brought that down to under 60,000-70,000 deaths a year – still a lot of deaths, but more than a 90% reduction.

Now, I’m worried we’re going to reverse those gains because of this anti-vaccine movement in Europe and the US. That’s going to extend elsewhere.

Thimerosal, a preservative with a tiny amount of mercury, has been removed from child and baby vaccines in the US and the UK, although there is no evidence supporting a link to autism…

After the Wakefield paper was retracted, the new allegation that popped up came from Robert F Kennedy Jnr and others, claiming that it was the thimerosal. But it was removed from childhood vaccines and the rates of autism did not decline. There are also large-scale epidemiological studies showing that there’s no link between autism and thimerosal.

What the anti-vaccine movement does is play this game of whack a mole: you knock one down and a new one pops up. It shifts from MMR to thimerosal to spacing vaccines too close together, to aluminium in vaccines, and it’s all garbage. None of those things cause autism. We’ve learned a lot about the neurobiology and genetics of autism to know that this is beginning prenatally, well before children ever see vaccines.
"If there is an environmental trigger for autism it’s happening very early on in pregnancy, around the time of conception."
So what does cause autism?

There was a paper released just last week in bioRxiv identifying 99 genes associated with autism. Autism has a very strong genetic basis, which is not to say that there is no environmental impact, because we still have this phenomenon of epigenetics; but if there is any environmental trigger it’s happening very early on in pregnancy, around the time of conception.

This is not something that’s happening after children are born.

These genes involved in creating autism are causing very complex rearrangements of the anatomy of the brain. The idea that a vaccine would do that is really just absurd.

Is autism growing?

The problem is that the diagnostic criteria for autism also shift. And then you have the added complexity that, often, for children to get special services from the school system they have to have the autism label. What used to be diagnosed as all sorts of things back in the 60s and 70s is now labelled as autism. The numbers are going to go up a lot more, because we’re getting much better at diagnosing girls and women with autism.

We used to say it was 10:1 boys to girls, but now we’re recognising that many girls and women are on the autism spectrum but often it’s more subtle, because they’re more socially adept; they can camouflage their autism better. But they have very high rates of co-morbidities like OCD or ADHD, or even eating disorders. A lot of girls with eating disorders may in fact be on the autism spectrum.

Wakefield has relocated to Austin, Texas and there has been a drop in vaccination rates in Texas. Are those facts in any way related?

It’s hard to know. Certainly this terrible false documentary that he’s been involved with – Vaxxed: From Cover-up to Catastrophe – hasn’t helped. How much Wakefield is a factor is difficult to estimate, because it’s grown so much bigger than Wakefield. We now in Texas have a whole political action committee (PAC) that’s anti-vaccine and raising money for candidates to run on anti-vaccine platforms. It’s happened in multiple states in the US. There are more than 480 websites that are anti-vaccine.

The anti-vaccine movement has been focused on California and Texas. What’s the difference in approach?

In the US, the anti-vaccine movement really took off first in California, having come from Europe. It was one of 20 states that allowed non-medical vaccine exemptions for reasons of personal or philosophical belief. Then there was a terrible measles outbreak in 2014-15 in southern California and the Californian legislature responded by closing that loophole. If you want to go to public [state] school, you have to get vaccinated. That largely ended the problem.

Then, it shifted to Texas, which is the largest state that allows philosophical exemptions. In Texas it’s very much libertarian; in California, there’s a libertarian element as well, but it’s interesting that it’s coming both from the political left and right.

There is evidence to suggest that it’s educated people who are leading this movement.

As I like to say, educated enough to do a Google search, not quite educated enough to know what the hell they’re Googling.

What’s driving it?

That’s the most important question, and it’s one I can’t answer. There’s a lot of money behind this. Who’s paying for all this? It takes a lot of money to make PACs effective and put up all these anti-vaccine legislators.

Is there evidence that the anti-vaccine movement is targeting vulnerable communities?

Well, certainly we saw this in Minnesota last year, where they were absolutely predatory on the Somali immigrant community. They convinced them that vaccines cause autism and caused a horrific epidemic of measles.

You suggest that the anti-vaccine movement is undermining care for autism. How does that work?

One of the problems is that when the term autism is discussed in state legislatures in the US, and presumably in European parliaments, one of the first topics that then arises is vaccines. It distracts from the things we really need to focus on for kids and adults on the autism spectrum. Are they getting the special services they need? And then as adults, adequate job placements?

Instead, the energy gets shifted to these false arguments about vaccines. So I think it’s been harmful to the autism community.

You’re not sure whether Donald Trump has galvanised the anti-vaccine movement. But would you say he hasn’t supported the vaccination argument?

He’s certainly not supported vaccinations, but in fairness to President Trump we didn’t get a lot out of the Obama administration and the Bush administration before that. Why have the US federal agencies been so silent about promoting vaccinations? I think when the anti-vaccination movement started in 1998 the federal agencies saw it as a cult movement and they thought it was best to ignore it. Unfortunately, they’ve largely continued that position even though the anti-vaccine movement is no longer fringe… it’s a full-blown movement affecting public health.

How do you win an argument when empirical facts and scientific expertise are seen as inherently suspect by your opponents?

There is a vacuum out there. While the anti-vaccine movement is very well-organised, well-funded, very adept at the use of the internet and social media, there has not been a response on the pro-vaccine side. So your question remains untested. I believe if there was a more active pro-vaccine lobby, most parents would listen to it.

There are diehards who fully believe the conspiracy theory and you’re not going to reach those individuals. But I think for the majority, you can reach them. That’s my motivation for writing the book.

How do you see things developing with measles and other vaccines?

Unless there is a well-focused and effective response, this thing is not going to get any better. All the signs are that it’s going to get worse. My big worry is that this is going global. The US and Europe are very good at exporting their culture, and now we’re exporting this garbage. What happens when the anti-vaccine movement moves into India?

Buy Vaccines Did Not Cause Rachel’s Autism by Peter Hotez on Amazon HERE.

Evaluation Fundamentals

From Smart Kids with LD

By Kenneth H. Magrath, Ph.D, FACAPP
December 6, 2018

At a Glance
  • Evaluation is the foundation on which your child’s education will be built.
  • There are three phases to an evaluation: Establishing the reasons for an evaluation; assessing your child; and reporting the results.

For a child with learning disabilities or ADHD, the evaluation is the first step toward addressing his issues. Knowing what to expect will ease your fears and your child’s and ensure that the results are used appropriately.

Evaluation Goals

A good evaluation begins with a set of clear goals and objectives. Ask yourself the following questions:

  • Why is the evaluation being done?
  • What do we hope to accomplish?
  • What can be done with the information once it is collected?

The answers to those questions will help define the objectives, which should then be discussed in detail with the evaluator before the assessment begins.

Assessment Components

A thorough evaluation has four core components:

  • Developmental History: This is a detailed review of your child’s medical, educational, family, and social background. This information provides context for the data that will be gathered during the assessment. Accurate diagnoses of learning and attention disorders, for example, require ruling out medical causes for these concerns.
  • Cognitive Assessment: This is a detailed examination of learning skills and abilities. Intelligence testing is usually a part of this work. Well-developed IQ tests are excellent catalogues of the thinking skills that are required for success in school. The cognitive assessment should also include specialized measures of attention, memory, and planning and organization (executive functions).
  • Academic Achievement: A comprehensive battery of tests is used to evaluate your child’s skills in reading, math, and writing. Most of these batteries assess basic skills, the ability to apply the skills, and the ability to work rapidly and efficiently.
  • Behavior, Social and Emotional Functioning: This portion of the evaluation assesses your child’s behavioral strengths and challenges, interpersonal skills, and emotional life. It’s important to identify strengths and assets as well as any difficulties that might be present.

Evaluation Results

The assessment should result in a comprehensive written report, which the evaluator should discuss with you in detail. In addition to a diagnosis, the report should contain specific recommendations for next steps and assistance. That information should be used to develop an Individualized Education Plan (IEP) or 504 plan.

An evaluation report usually contains a great deal of data and technical information. It should, however, be written in a way that’s easy to understand for nonprofessionals. All jargon should be well defined, and if it’s not, don’t hesitate to ask for explanations.

If the information is going to be shared with the school, it is preferable for the evaluator present the results. This usually takes the form of attendance at IEP meetings to interpret the data and advocate for your child.

Your child should get feedback from the evaluator as well. He should walk away from the process aware of his strengths and how to use them, and secure in the knowledge that parents, school personnel, and the evaluator will be working together to use the information in ways that will be helpful to him.

The author is a licensed clinical psychologist who has served on the faculties of the Cornell University College of Medicine and New York Medical College. He works with children, adolescents and adults to identify learning strengths as well as challenges.

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