For Whom Autism Speaks

for whom pic for blog

Though it is generally time consuming, I believe it’s paramount to look at both sides of a controversial subject before or instead of coming to a conclusion. This week I went to a lecture featuring Bob Wright, Co-founder of Autism Speaks. Before the lecture, I had heard about the ‘Boycott Autism Speaks’ movement. I was curious to hear what Bob Wright had to say and if any of the concerns expressed by this new movement would be addressed. The talk was relatively short. He showed several videos that  highlighted work that Autism Speaks has accomplished in their 10 years of existance. If you’re not already familiar with Autism Speaks, have a look at their website, which is full of resources. There are many free ‘kits’ that are designed to help those living and working with people who have Autism. It’s impressive.

If you go to www.BoycottAutismSpeaks.com, you’ll be able to read some of the objections to Autism Speaks. Here’s a summary – the senior leadership does not include anyone with Autism, the organization has expressed anti-vaccine sentiments, they have allowed the Judge Rotenberg Center* to recruit students at Autism Speaks fundraising walks, a disproportionately small amount of the budget is spent on services and supports for families, and their advertising presents Autism as a burdensome tragedy for families. But there are other groups that have found fault with Autism Speaks, such as Autism Parenting Magazine and numerous blogs.

*While I was researching online for this post, I got diverted (only for about 3 hours!) on the subject of using aversive therapy, specifically an electric shock device used as a behavior modification tool, which was the subject of controversy around the Judge Rotenberg Center. Personally, as soon as I hear electric shock, I think about 2 things:  invisible  fences for dogs (which always seemed kind of cruel to a cat owner, even though I understand that they keep pets and people safe) and ECT (electroconvulsive therapy) which enabled my sister to function again after a severe bout of post-partum depression for which she was hospitalized. To begin with, if you can stomach it, you can see a video of a student at the Judge Rothberg Center, Andre McCollins, being restrained and shocked many years ago when he refused to take off his coat  –  https://www.youtube.com/watch?v=YcxpGKctZMs. It’s DISTURBING. There was an ensuing law suit, among other consequences, after this incident. The use of such a device in this instance was undeniably excessive, inappropriate, and abusive.

However, when it’s used the way it was designed, to deal with extremely aggressive or self-injurious behavior, some parents actually believe it has saved the lives of their children. Parents have pleaded with the courts to allow this form of treatment.Talk about considering both sides of an argument! I challenge you to do some research. Find the testimony of a former employee of this school and an article by parents who swear by the methods used. What would lead parents to approve of this? Are they sick? Well, you decide. What if your child had an intense self-harming behavior such as head banging that was severe enough to cause a stroke or dislodge  corneas? What if your child made a habit of gouging their eyes out or chewing on their arms? What if the side effects of the medications the Dr.’s prescribed for these behaviors made you feel like your child was not living at all?  If, like me, you’re curious about this issue, check out these links….

New York magazine did a story on the Judge Rotenberg Center prompted by the incident with the student in the video cited above, Andre McCollins. Read the article here –

http://nymag.com/news/features/andre-mccollins-rotenberg-center-2012-9/index1.html

In response to a television news story about the use of electric shock devices at the JRC (Judge Rotenberg Center), the school made an interesting point – “the notion that because a treatment involves causing the patient to experience pain, it therefore is equivalent to torture does not make sense. By that standard surgery and dentistry would also qualify as torture and should be banned as well.” See the school’s full response –

http://dotnet.judgerc.org/Documents/judgercdocs/EmailtoMinton.pdf

And finally, on the other side of the argument, is the testimony of parents who support the correct use of the treatment. Read more –

https://www.washingtonpost.com/posteverything/wp/2014/06/24/the-fda-may-ban-the-treatment-keeping-our-daughter-alive/

Now back to the objections with Autism Speaks…

What I don’t know is whether Autism Speaks allowed JRC to recruit students before or after they stopped using this method as part of a plan for new students. The article states that, “Since 2009, the New York State Board of Regents has banned the use of the shock device on any new students from New York, and last fall Massachusetts prohibited the use of shocks for all new students.” What seems clear is that some parents with children who have a history of self-harm and aggression feel they have exhausted all other resources. For them, JRC seems to have given them a solution.

However, allowing JRC to recruit during their fundraising walks is only one objection of the boycotters.

The question I can’t seem to find a simple answer to is how the massive funding Autism Speaks raises is specifically used. I’m not an accountant so I can’t seem to reconcile the numbers that the boycotters post and the financial statements from Autism Speaks. Maybe you can. Here’s the link to the statement from last year published by their auditors –

https://www.autismspeaks.org/sites/default/files/docs/final_autism_speaks_2014_28229.pdf

Yes, it does seem as though they spend an inordinate amount of money on their salaries. And on research. I think to most Americans, research in connection with a medical condition can only be good. But the question is, to what end? Bob Wright said in his talk at Elmira College on Thursday evening, that the focus was on, “not a cure so much as treatments.” The organization has invested a large amount of money into their ‘MSSING’ project. Not only am I not an accountant, I’m not a scientist. So I don’t fully understand genomes. Here’s the simplest definition genomes from the NIH website… “A genome is an organism’s complete set of DNA, including all of its genes. Each genome contains all of the information needed to build and maintain that organism. In humans, a copy of the entire genome—more than 3 billion DNA base pairs—is contained in all cells that have a nucleus.”

Will this research help the millions of kids, adults, and families dealing with Autism?  It would certainly help to know if a child has Autism during pregnancy if it meant they would get early treatment. Because I am a special education teacher, I can say from experience that early identification and treatment hold great potential for children with Autism. What else might research accomplish? One thing that has puzzled me in recent years is that we rarely see kids with Down Syndrome anymore. What happened to them? ABC News reported, “An estimated 92 percent of all women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, according to research reviewed by Dr. Brian Skotko, a pediatric geneticist at Children’s Hospital Boston”. Is that something that research will bring about? That seems pretty awful – that this generation is raising money to fund research so that there will be fewer children born with Autism because more mothers-to-be decide to abort. That said, I’m also not the parent of a child with Autism, or any other developmental disability. As a special ed. teacher, I have the same benefits of a grandparent. I get to know and love these children 25 hours a week but then I put them on the bus and go home to a quiet house and time to myself. To me these children are like treasures – as they learn to discover the world and their ability to function in it, they are joyful and proud. And to participate in it is such a privilege.  So I come back to the question of – research to what end?

And now my question to families – is raising a child with Autism a tragic burden? Having worked with so many of these families over the years, I recognize that it takes a loving, resourceful, and committed person/family to raise a child with Autism. But there are some things in life that are both a burden and a blessing, aren’t there? If we want to prepare families for life with a child with Autism, they need to know about both parts. And they need to have all of the resources and support we can provide. Could Autism Speaks provide more? Yes, and I hope they will hear the voices of families asking for that.

In conclusion, I’m grateful for the awareness that has been generated by Autism Speaks, although watching the videos the other night at the lecture made me a little apprehensive about the thinly veiled grandstanding. Personally, I wouldn’t donate money unless there was a shift in priorities and more forthcoming disclosure about the ultimate goals of research. But I also hope that people who want to help support people and families of those with Autism don’t turn away from that desire because they don’t like the direction that Autism Speaks is going. The good news is that there are so many more ways to get involved besides pledging and walking.

Let’s hear what you think!

Autism Part II

glass half full edited

High Functioning Autism and the Problem with the Half-Full Glass….

As a longtime Special Ed. Teacher, I recently experienced being on the other side of the table. Literally and figuratively. It’s been revelatory. I attended a CSE meeting as a support to a friend. And I learned something – I never want to sound as though I’m dismissing the concerns of a parent.

Sometimes parents need assurance – that they’re not alone, that they’re doing a good job, etc. Sometimes though, parents need to be heard and validated for their concerns about their child. I have probably done this before while trying to comfort an anxious parent – inadvertently dismissed their concerns by ticking off all the typical things their child does… knows letters, sings the words to lots of songs, does a great job playing on the iPad. But most likely there are also times that parents don’t want to hear about all of the things that they already know their child can do. It can come across as seeing a glass that is a half-full.

The problem with looking at a child with High Functioning Autism as a half-full glass is that families want their children to have lives that are a full glass – to have friends, to do well in school, to be prepared for a fulfilling place in the real world. If we settle for the half-full glass, it’s easy to lose focus of the path to a full glass. And I for one, never want to do that to a parent or child. It will take people on both sides of the table to fill those glasses. Let’s get pouring!

What Happened to PDD-NOS

 

PDD NOS FINAL PIC

The DSM-5 brought changes that – take note – not everyone on your child’s IEP team may be aware of. If there’s a psychologist present at a meeting, there shouldn’t be any confusion.  But there isn’t a licensed psychologist at every IEP meeting and since only a licensed psychologist (vs. school psychologist) can make a medical diagnosis of an Autism Spectrum Disorder, other service providers might not know about the changes in the DSM-5.  I’ll put all pride aside and tell you that I’m just recently, after 20 years of working with kids with special needs, learning the difference between the current educational and medical diagnosis of Autism and who makes which (that’s my goal for a future post). Embarrassing, yes. But I’m modelling old dogs learning new tricks.

But first things first – PDD-NOS – then and now…(I’ll assume that if you have any interest in this post, you already know that PDD-NOS stands for  pervasive developmental disorder not otherwise specified).

The APA (American Psychiatric Association) has an information page that will be helpful in understanding the change in the diagnosis of Autism. If your child was previously diagnosed with PDD-NOS, you might want to print a copy of the APA information sheet. Go to http://www.dsm5.org and click on Autism Spectrum Disorder under ‘What’s New.’ It’s pretty simple to understand and might be a good thing to have in your  child’s ‘Big Book of Everything’ – you know, the reports, evaluations, IEPs, etc. Here are a few tidbits of information from the page:

Using DSM-IV, patients could be diagnosed with four separate disorders: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, or the catch-all diagnosis of pervasive developmental disorder not otherwise specified. Researchers found that these separate diagnoses were not consistently applied across different clinics and treatment centers. Anyone diagnosed with one of the four pervasive developmental disorders (PDD) from DSM-IV should still meet the criteria for ASD in DSM-5 or another, more accurate DSM-5 diagnosis. While DSM does not outline recommended treatment and services for mental disorders, determining an accurate diagnosis is a first step for a clinician in defining a treatment plan for a patient..

AND THIS –

More recently, the largest and most up-to-date study, published by Huerta, et al, in the October 2012 issue of American Journal of Psychiatry, provided the most comprehensive assessment of the DSM-5 criteria for ASD based on symptom extraction from previously collected data. The study found that DSM-5 criteria identified 91 percent of children with clinical DSM-IV PDD diagnoses, suggesting that most children with DSM-IV PDD diagnoses will retain their diagnosis of ASD using the new criteria.

But what does it all mean and why should you care?

If your child has a previous diagnosis of PDD-NOS, there is a 91% chance that he/she will retain their diagnosis of an Autism Spectrum Disorder. Now maybe you don’t want that. I’m not writing this to change anyone’s mind. However, if you believe that an educational classification of Autism is most appropriate for your child, you may need to advocate for that. The school district may look at that PDD-NOS diagnosis and tell you that it is NOT a diagnosis of Autism. Personally, that would make me nervous. If the service providers don’t know that PDD-NOS is an autism spectrum disorder, how will they provide appropriate and excellent services?

PART II

How common is it for CSE’s to decide that a child with a medical diagnosis of Autism should be classified as Speech/Language Impaired? Sometimes everyone at an IEP meeting will agree that this is appropriate. Sometimes, however, there might be disagreement. An advocacy group responded with this….

All decisions made at an IEP meeting should be done by the team as a whole based on the most recent evaluations and reports from the parent, child’s teachers, and other service providers.  If the child has a diagnosis of an Autism Spectrum Disorder, and the parent wants a classification that reflects the diagnosis, as the parent is an integral part of the IEP team, she should be heard.   Each case is particular, and i have seen cases where a student has been appropriately classified as S/L Impaired over Autism (when diagnosed), however that is not the norm.  If a parent wants the classification to be changed, she has options.  She could request another IEP meeting,  file for  mediation, or an impartial hearing.

The final question here is – why would a CSE want to push for a  Speech/Language Impaired classification? You tell me. But if your transitioning preschooler has a diagnosis of PDD-NOS, make sure your IEP committee knows that it’s an Autism Spectrum Disorder – then and now.

Has anyone else had this or a related experience? I’d LOVE to hear more about it – please share!

Light It Up Blue

autism awareness day collage

 

Why Me & the Crew

Are Blue

on April 2

(it’s a color, not a feeling)

 

Autism is not an illness. Although there are areas of impairment associated with Autism, it is not contagious, progressive, or degenerative. I have a confession; Autism is not something I hope is gone in 20 years. Does that seem selfish? Maybe it is. I just want to say that every child with Autism I’ve worked with had something precious, amazing, and unique about them. I’ve said it a million times but maybe today, World Autism Awareness Day, is the perfect day to say it again; there are few things more thrilling than watching a child with Autism break through their shell to take a peek around the world, to let you see who they really are, to share in what makes them happy, to see how excited they are when they learn how to communicate. So today and throughout the month of April, we celebrate these very special people.

Autism and Andalusite

autism gems edited

About 6 years ago, a co-worker asked if I would be interested in teaching a class of preschoolers with Autism. I answered, “No.” To be polite, I may have added, “I love what I’m doing now,” and it was true. After teaching kids of all ages with special needs for nearly 20 years, I was currently teaching an integrated preschool class. At that point, however, I hadn’t had much experience with young children diagnosed with Autism.  I’ll confess that when I start something, I want to do it well, so knowing that about myself solidified my answer. Soon after that question was posed to me, I met Lila.

lila pic with scarf

At the time I first met Lila, she did not yet have a diagnosis. I went to meet her in the daycare classroom of toddlers down the hall because I had been told that she might be moving up to our class.  I remember that they were having cake, probably for a birthday celebration that day. The other kids were sitting at the table and eating but Lila was playing and seemed oblivious to the cake happiness going on at the table. I went over to her and got down to her eye level and asked, “Lila, do you want cake?” She moved away from me to continue her play. I don’t know what compelled me, but I picked her up and brought her over to the table. The screaming and thrashing that she did in the seconds it took to get her to the table made me question my actions. But as soon as she got sight of the cake, she perked up and sat down to eat. It occurred to me that maybe she just didn’t understand my question. Soon after that day, she moved into our classroom and I fell in love.

lila and me pjs

Lila was lovely and high-spirited. She used her facial expressions and affection to communicate since she didn’t have many words to express herself.

lila and owen with frame

We used pictures to help her learn words and understand what was expected of her; she learned quickly. Not long after getting a diagnosis of Autism, a spot opened in our Partnership Program, an intensive classroom primarily for children with Autism. If offered a place in that class, she would receive a significant amount of individualized instruction. I remember hugging Lila’s mom, both of us with tears in our eyes, when the decision was made for Lila to change classrooms. We both knew it was a great opportunity. Over the course of the next year, I’d see and hear Lila in the hallway and be amazed at the progress she had made.

Over the years, there have been many other unique and special kids with Autism who have come through the door of our classroom. We’ve learned so much from every child. Recently, I heard a television commentator remark that “Autism is a terrible thing.” It struck me how strongly I disagreed with that statement.  I recognize, having worked with so many brave and caring families, that having a child with Autism is incredibly challenging. But witnessing these children move from their private world into the bigger world around them is a thrill like no other. It’s like watching a baby bird hatch. The kids themselves I liken to rare, exotic gems, perhaps andalusite.

”…andalusite looks quite unlike any other gemstone, with patterns of colour dancing around the facets.”*

Andalusite is a strikingly beautiful gem, but it is largely unknown to the general public…”**

I can’t think of any better analogy to explain what working with these kids is like. Some have no words but know all of their letters. Some can’t answer a question but learn songs in a snap. Others could tell you the shortest route to anyplace in town. The list of unique qualities goes on and on.

Four years after first meeting Lila I saw her again. Now 7 years old, she’s taller, more talkative, and lovely. When I looked at her I still saw stunning ‘patterns of color dancing around the facets.’  For some people, loving a child with Autism may be an acquired taste; after you learn to appreciate them, you find your life is unmistakably richer. You come to see that Autism is not a terrible thing, no more than andalusite is a terrible gem.

lila and mary 2014 with frame

*Gemstone.org

**Gemselect.com