Inclusion versus Specialized Education

I’ve just finished reading an article (and a very good one, at that) that recommends inclusion for children with severe disabilities as a research-based practice. (Jackson, L.; Ryndak, D. & Wehmeyer, M. 2010. The Dynamic relationship between context, curriculum and student learning: A case for inclusive education as a research-based practice. Research and practice for persons with severe disabilities.33-4, (4-1), 175-195). The article used theory, historical records, and empirical research to make the case that inclusive education is a research-based practice for children who have extensive support needs.

It is a fascinating article, especially for me as a former university professor. I loved the way they incorporated history, theories, and current research. However, I am left with a couple of questions.

A school with which I am familiar calls itself an inclusion school. However, two of its students, with the support of and at the request of parents, are leaving to attend a self-contained classroom and a private school. One child has been having challenging behaviors all year, and voicing his concern that he is not as “smart” as the other kids and that he “can’t think” like them. He receives social and emotional support in school as well. The other student has cognitive challenges as well, and the team and parents are concerned that he does not have friends or a community of like children and is not making academic progress at school.

Theoretically, I agree that inclusion is the best. Practically speaking, is there something else we should have been doing for these students? We can’t force typical children to want to ‘hang out’ after school with the child with challenges, and when a student becomes painfully aware that he is different and is doing different work in school, shouldn’t we respect that? I can only imagine what that must feel like to a child, to see his classmates doing more challenging work and not be doing the same. Both of these students are unhappy at school. Could more have been done? Perhaps (I have not been involved in these particular situations) the situations are limited by the knowledge/skills/beliefs of the educators and administrators. Perhaps, in the ideal world, these students could remain in inclusion. But right now, I don’t see how.

Comments on Frontline: The Vaccine War

Last night I watched “Frontline: The Vaccine War” on PBS (I watched it online the night after it aired). I thought it was pretty fair, but I followed the blog comments afterward and was astounded. The vitriol and anger people have toward vaccines and the CDC, and the scientists who have studied the links is astonishing. One mom was quoted on the documentary as saying there’s no more polio or diptheria, when are we going to stop those vaccines? Perhaps that true in the US, but certainly not on this planet. One traveler from another country carrying the polio vaccine and one unvaccinated child…there’d be polio again!

There are at least 12 studies that have shown no connection between vaccines and autism. Wakefield’s 1998 study implicating the MMR vaccine to ‘gut inflammation’ in children with autism has been totally discredited and has never been replicated. Studies have shown that mercury poisoning (from fish and other sources) is not at all similar to autism. In Denmark, scientists studied half a million children, half of whom had the MMR vaccine and half who hadn’t, and there was no difference in autism rates.

One commenter, who happened to be a doctor, made complete sense to me. The anti-vaccine people claim that there are hundreds of thousands of families whose kids have been injured by vaccines; given this digital age, where are their pre-and post-injury home videos? This commenter mentioned that he had asked families of his patients for their pre-vaccine videos of their children and the families refused. If they were so certain vaccines had injured their child, why would they refuse to document it?There are now studies of siblings of children with autism via videotapes. Researchers are finding that as early as 6-12 months they can see signs of autism in the home videos of these siblings.In my 30-plus years of being in this field, I have yet to meet one parent who claims their child was vaccine-injured. Is that proof? No, not at all; just an anecdote.

Vaccines, again and Autism Speaks

Two notes for today: Tonight, Frontline, the television investigative news show, is presenting "The Vaccine War"...vaccine opponents bemoan the fact that there are not enough scientists on the anti-vax side ( are there really ANY scientists who are anti-vaccinations?), and that the program relies mostly on mainstream research. I really want to watch this show. And Age of Autism, an anti-vax website, is asking viewers to tweet and blog during the show's airing.

And another blog article entitled,

"Why the Autism Speaks' Scientific Advisory Committee Needs to Resign" argues that the scientific advisory board of Autism Speaks is redundant, dated, and only approves grants from researchers they agree with. I know I've read that the author, Katie Wright, is on non-speaking terms with her parents, the Wrights, who run Autism Speaks....and Katie is the mom of a child with autism.

Personally, I am really tired of trying to keep track of who's on whose side....although to some extent I agree with Katie that more research on treatments is needed. Autism is in some cases genetic, but not 90% of the cases. I also agree that biomedical treatments need to be researched.

So can we stop the arguing and get on with treating these children who are soon to become adults?

My new piece of art

Hello,

Here it is, the watercolor-markers-on-fabric piece that I bought yesterday at Cambridge Open Studios. It looks more orangey in this photo than it does in person, but I just love it anyway. The artist, Nick M., is 21, on the spectrum, and is going to have his own website soon. I will post it when I have it.

He has other works on paper, but I loved the fabric part of this. I am so excited to own this!

More artists with disabilities

Hello all,

I learned about this studio yesterday at the Cambridge Open Studios. I visited their website today and realized I know one of the artists! (Ethan C.). They are participating in Somerville Open Studios next weekend and I think I will go visit. Terrific place for professional artists...

http://www.outsidethelinesstudio.org/aboutus.html

I am loving art by people with challenges of all kind. Check out this website! What a wonderful way for people with differing abilities to lead an adult life.

Susan

New purchase

Hi,

Today I bought a piece of beautiful art...my neighborhood is having an "Open Studios" weekend and I found some very attractive watercolors on fabric, by a 21-year old named Nick who is on the spectrum. It's really pretty; when I bring it home tomorrow I will post a photo...

Susan

A mother's blog

I really enjoy reading Kristina Chew's daily blog about living with her teenage son, Charlie, who has moderate to severe autism. Each day, she manages to describe some simple activities that she and her husband do with Charlie when he is out of school. She's a good writer, an astute observer, and a thoughtful, loving mom. I encourage you to read it:

http://autism.typepad.com/autism/

I have it bookmarked on both my computers and read it faithfully. It reminds me what families do, why they do what they do, and one family's point of view. They love Charlie, he is theirs, and this is their story. Read it and let me know what you think.

Once Again, Vaccines

Two somewhat recent publications related to the vaccine controversy have come across my desk. The first is an October 19, 2005 publication by the Cochrane Review, a compilation of information about all things medical. An international team of researchers reviewed the evidence found in 31 high-quality studies (out of a total of 139 studies found), creating the "most authoritative assessment yet available". These authors found that

1. . There is no credible link between MMR vaccine and any long-term disability, such as Crohn's disease or autism;
2. MMR is an important vaccine that has prevented diseases that carry a heavy burden of death
3. The lack of confidence in MMR has cause damage to public health
4. People arguing for or against any therapy need to make sure they have the facts, no opinion or hypotheses.

Demiceli et al: Vaccines for measles, mumps and rubella in children. The Cochrane Database of Systematic Reviews 2005, Issue 4.

So...the science clearly states that there is no vaccine/autism link, according to a well-known group of reputable medical authors, none of whom had any conflict of interest or proprietary interest in the studies, their funding, or the outcomes.

However, a new book, The Autism Book: What Every Parent Needs to Know about Early Detection, Treatment, Recovery and Prevention by Dr. Robert Sears, MD, is a little more provocative. He cites the studies indicating that there is no scientific evidence linking vaccines to autism, but he goes on to talk about some children being genetically or immunologically sensitive to the effects of vaccines....he says for parents who are expecting a second child after one diagnosed with autism, "Avoid mercury". He writes, "Your next child might have the same genetic risks that your child with autism has. It's therefore important to limit any factor that may be involved in autism. If vaccines, or the chemicals in them, play a role in autism, then, obviously limiting vaccines would be smart" (pp. 337-338).

Common sense? Or what parents want to hear? Dr. Sears also discusses how he believes the autism explosion is real, and not merely an artifact of better and broader diagnostic ability. Sears is a well-respected physician who has worked with children with autism for over a decade, and he offers hope, while admitting that the science isn't there yet. He describes biomedical treatments, how they work/if they work, and offers resources to parents ranging from mainstream (CDC, AAP) to the newer organizations (SafeMinds, TACA, Generation Rescue).

It sounds fair enough. How does it sound to you?

Suggestions for working with kids on the spectrum

Every so often one of these articles passes my way, and I usually read them, then toss them. However, today I am going to give my top ten tips for working with/interacting with children (and adults) on the spectrum. First, I must remind the reader that if you know one child with autism, then you know that child; each child on the spectrum is as unique as the snowflakes...no two are the same.

1. Use non-verbal, visual communication to back up your verbal communication. Kids on the spectrum are often visual learners, and take comfort from a visual schedule, visual directions, visual reminders.

2. If you don't have visuals on hand, keep your verbal communication short, direct and to the point. One direction at a time, and use a gesture to promote success.

3. Give the child/adult time to process your directions to him; this may take several seconds, and it may seem a lot longer. For those of us who are neurotypical, we speak fast, answer fast, and expect a quick response. For most kids on the spectrum, they are trying to process the question, then they have to process their answer. For many of us, silence is uncomfortable, and we quickly try to fill it up (I am so guilty of this myself!) but really try to give the child processing time.

4. Keep a calm, even tone of voice. Many of us have learned the phrase "be neutral" to the child, except when very happy or proud of what the child has done. Otherwise, keep cool, calm and collected.

5. Avoid touching a child on the spectrum, unless you and he are close, you know him (or her) quite well, or are doing deep pressure. Many kids on the spectrum are touch sensitive, and a light tap on the shoulder may feel painful to them. However, when appropriate, deep hugs and deep pressure can be calming.

6. It has been suggested to approach kids on the spectrum quietly and from the side; often, they have problems with eye contact, and it is theorized that their peripheral vision is better. In doing so you can reduce the risk of startling them, sending them into sensory overload, which is hard to calm down.

7. Tell a student when an activity is about to end; give a visual reminder, or a countdown, or better yet, both!

8.When a child has behavior issues, the first rule is to prevent, then teach an alternative behavior, then respond to the challenging behavior. Many teachers of these children are restraint trained. However, they are also taught to prevent the situation in the first place, to teach an alternative behavior, and to reinforce those alternatives highly.

9. Break tasks down into small steps that a child can accomplish.

10. Finally, have fun! Respect the skills and interests these children have, and build on those interests. Share these interests, whether they be cars, the weather, TV shows, movies....use these interests to help the child read, socialize, do math and have fun.

Watching "Parenthood": Asperger's alert

There's a new television show called, "Parenthood", on NBC Tuesdays at 10 PM. (No, I do not stay up to watch it; I watch it online the day after). The show involves a family of sisters and brothers and their own families, with kid troubles and financial troubles and school troubles. I started watching the show because I like Lauren Graham, from "Gilmore Girls", and am sad to say she is still playing a kooky single mother (Type casting, anyone?). But I stick with the show b/c one of the adult brothers has a son recently diagnosed with Asperger's. How do they fare at portraying a child with Asperger's?

I have to give this kid actor credit...he does get the flat affect, slightly clumsy, sensory-challenged bit down. He also nails the obsessions, the rituals, and the lack of social awareness well. What the show doesn't do is portray the situations in which the family finds itself very realistically. Max, the boy with Asperger's, get expelled from school (and this is in the fictional USA, where this is illegal to do). The parents struggle for about three days to find a school, are told they have to wait a year, beg the principal/director to evaluate their child, saying "You'll love him"...as if accepting a child into a private school was based on whether or not the administration 'likes' the child. And then once he is accepted, there's no debate over how they are going to pay this very expensive tuition. No IEP, no school district involvement, no mediation or hearings or expert witnesses. This family seems just to assume they will pay for it. And, on the first day, the child runs happily into the school as if being with only other children with autism is the best thing he's ever seen. No struggles, no fights about why he isn't going to his old school, no behaviors at all. And no qualms on the parents' part about sending their son to a 'special school'. In fact, no talk at all about what this 'special school' actually does with their students.

And so the TV show "Parenthood" does a decent job of talking about living with a difference in the family, some of the parents' heartache and fear, a lot of disappointment and just a little denial, but little accuracy in how Asperger's is actually portrayed. Well, I am not surprised. The writers are , in all likelihood, unfamiliar with Asperger's and may or may not have had a consultant in writing this child into the script. And they are limited by the 43-minute-drama hour, in which conflicts have to be resolved quickly. But wouldn't it be nice if just for once, a TV show got the behaviors accurately for once? Told the truth on television? Or is Asperger's in real life just something that the writers think wouldn't sell?

A Mother's Courage: documentary

Hi all,

I just finished watching "A Mother's Courage: Talking Back to Autism" on HBO, and I admit to feeling a little disappointed. I had expected a more informative look at the various therapies/interventions out there, and instead there were very small clips of Temple Grandin, Simon Baron-Cohen, Geraldine Dawson describing autism. Then Margaret, the mother in the film, meets another mother whose son was helped to communicate by Soma Mukhopadhyay, who established an organization in Austin, Texas called "HALO" (Helping Autistic Learning Outreach). Soma, in India, taught her son Tito using a method she developed called the Rapid Prompting Method...now Tito, her son, is an adult, a poet and published author. Margaret takes her son to Soma and we see the first few times Soma teaches Keli, the son. Yes, Keli does use pointing to answer some questions, and Soma uses her Teach and Ask method. Now, I was impressed at how much Keli seemed to know, including how to spell by pointing to letters on a letter board. Unlike Facilitated Communication, in which a facilitator holds the pointer's hand or arm, in Rapid Prompting Soma uses small tactile cues...however, to what extent is she moving the letter board closer to the next appropriate letter for the answer? In the second to last scene, we see Soma telling Margaret that yes, Keli will learn to point and perhaps type to communicate, that he can learn grade-level material, and that Rapid Prompting will, indeed, work with Keli. I think Soma believes and tells all the parents that RPM will work for their child, and that inside every child with autism is a normal, thinking brain. I worry about anyone who has a method that they say will work for all kids, and that inside every child on the spectrum there is a normal, thinking brain. It's not that I want any child to be low-functioning;however, given the diversity that is 'autism', is it really possible that one method will work for all kids and that inside they are really typical? Somehow I find that worrisome. Also, how did these children learn to spell, when they aren't taught reading in school? Are they magically able to spell just by being around words? If that's the case, then why don't typical children all learn to spell just by being around words a lot?

Given all that, however, I appreciate each parent's concern and attempts to find the best method for their child. And if letter boards work, then by all means, use them. I do think that they should be used more often in schools as a means to spell and answer questions.

Clearly, the field nowadays does not have any method for predicting which method of intervention will work with each child, a sad fact....The world would be a better place if we knew that!

Other thoughts/comments?

Autism Awareness Month

Hello all,

Today, being April 1, is the beginning of Autism Awareness Month. You can go to this link to find out what is happening here in Massachusetts:

http://www.nmrls.org/youth/ysgrant/

Honestly, I wonder about the purpose of autism awareness month. It's a lot hard for me to believe that there are people out there who don't know what autism is, but I guess there are plenty. It's just that I wonder what the purpose of "awareness" is...attitude change? Acceptance? Education? I guess that because I've been involved with autism for so many years thinking about it is second nature to me. Does anyone have any good autism awareness stories?