Founder of Judge Rotenberg Centre Charged: Why did it take so long?

Filed Under (Behaviours, Institutions, Law) by Estee on 25-05-2011

Matthew Israel, Founder of the Judge Rotenberg Educational Centre where autistic students were taught to comply with electrical shock “treatment,” has finally been charged. Here from Boston.com:

The founder of the controversial Judge Rotenberg Educational Center is scheduled to face criminal charges in Dedham today arising from a night in 2007 when two special needs teenagers at the center were wrongfully administered dozens of electrical shocks, according to the father of one of the victims and another person with knowledge about the case.

In a deal reached with the state attorney general’s office, Matthew Israel, 77, is expected to be spared prison time in return for stepping down from the Canton-based center that he founded 40 years ago and accepting a five-year probationary term, said Charles Dumas, the father of one of the two victims in the 2007 case who said he spoke yesterday with prosecutors. As part of the agreement, the school’s day-to-day activities will also be overseen by a court-approved monitor.

As a mother of an autistic son, I am sick that it has taken this long after many of us signed petitions to stop him. I read through reams of his statements suggesting why this form of Behavioural Conditioning was an “effective treatment” for autism.

The Judge Rotenberg Center treatment goals include a near-zero rejection/expulsion policy, active treatment with a behavioral approach directed exclusively towards normalization, frequent use of behavioral rewards and punishment, video monitoring of staff and the option to use aversives, the most controversial of which is the use of electric shocks. The final item has provoked considerable controversy and has led to calls from several disability rights groups to call for human protection from behavior modification, behavior therapy, and applied behavior analysis approaches.(From Wikipedia)

“Its most effective backers have been the parents of some of these troubled students who say Israel’s center accepted their child when no other school would. Israel has said his methods work and have virtually eliminated the use of psychotropic drugs at his center,” says the Boston Globe.

Is this the type of quality education we receive for autistic students when “no other school” will provide it? And don’t kid yourself that similar aversive tactics are not used here in Ontario. You will hear of the autistic person being “ignored” by therapists as a behavioural tactic in order to stop the person from crying. Instead of attempting to figure out what might be the root and cause of upset, a child or person will receive this cruel form of “teaching.” It is my experience that this makes a person either more aggressive or shuts them down completely.

[Israel’s] tactics have been condemned as barbaric and savage by many top medical and mental health professionals. But despite some injuries and even deaths at the facility, the center has continued to get state approval to operate as a special-needs school serving some 200 students with serious emotional and behavioral problems, including autism and intellectual disabilities.

It has taken years for Israel to be charged and such tactics to be viewed as criminal. There have been many parents who have believed that this shock treatment has been helpful and have stuck up for the Centre, typically arguing that their children are aggressive or self-injure, and the arguments can sound compelling. This is one of the reasons why it took so long to charge Israel. This is the side of parent advocacy that is risky to autistic folk. There is a side to people we don’t want to see. There are difficult sides and as our history has shown, we’d rather lock it away in institutions, and treat it harshly and ignore it all together. I was never convinced that treating human beings with shock treatment against their will was ever a viable option. I don’t imagine I ever will be.

Autistic Pride Day

Filed Under (Acceptance, Advocacy, autism) by Estee on 24-05-2011

This is a day I always promote. Autistic Pride Day occurs on June 18th and the t-shirt designed above is by Jason Ross. Let me use Jason’s words to describe the importance of the day, since Jason is autistic himself:

Neurodiversity is just as it sounds, it is knowing how we are special, unique, and have a very our very own belief system that should not be imposed on other people. Why do we have Neurodiversity? If we didn’t have different kinds of minds and we were not wired differently, we would be considered the same. Wouldn’t that be boring? What would life really be like? Before people consider every one thinking the same way, we should be considering how others think too. There are many different kinds of minds and different ways of thinking and different ways of living. The only thing we can learn to do the same is having proper social skills to incorporate ourselves to function with each other to form relationships. It does not mean change our way of being and thinking. We need different perspectives in the world to teach each other about life. However, we do have free will to think of our different way of being, but that does not mean you can impose your ideas on others. It just means speaking your mind and telling your stories. The way we all can fix society is by any one in the world communicating their views to share it and evaluate what others say, but not getting angry or upset when we hear what they say. Listen to the suggestions and/or thinking the other person may be telling you, and adjust it to your state of being to become your unique ‘YOU’. Any one can believe whatever they want to, and can be what they want to be to succeed in their life, but they must choose to accept it. Otherwise someone will always be influenced by another and eventually Neurodiversity disappears. How sad would that be? Think about it!

I have been reading lots of blogs and Facebook posts these days. I continue to read the debates between terminologies: “a person with autism” or “autistic person.” The discussions illustrate the importance in how humans define and see themselves. The commentary suggests the tenuous ground where the term Autism still lies. The debate is important to discuss society’s responsibility to understand and accept people no matter what their label or inclincation. We are just human, after all.

It is also true that no person is their label. “Classified” individuals are treated as second class citizens despite the intention that labels are meant to be beneficial. A diagnosis can be a huge relief for parents and autistic individuals because there is no more mystery on why there are differences in learning and communicating. Parents and individuals can, if they are willing, stop berating themselves. Yet, we continue to segregate labeled people. The psychological impact of labeling and marginalization can be debilitating. While labels are invented to serve, they can also limit ability because people with learning disabilities are not believed to be individuals who can contribute to society or succeed. When a young person believes that of themselves, this is the devastation. A label can make it difficult for people to see what they are good at. This is but one more reason why Inclusion is an important goal for all people. We are always more than our labels.

Autism, like any other learning difference or disability is not equitable with intelligence. Thinking exists outside of reading and communicating. Explaining this to the to a person who only hears about autism from some charity ad that espouses that autism must be cured can be demoralizing for the person advocating for themselves or for their child.

When I read the Toronto chapter’s Autism Speaks’ ads in Canada’s Globe and Mail recently, I always want to ask– since they are raising money for genetic testing for autism — how such research will help with “early intervention?” I think the question we should ask is not only how, but what kinds of teaching would help a very young autistic child? Also, what about the autistic adult who gets looked over past the age of twenty one?

What is the end goal in helping the autistic child (I will continue to use “child” because the premise of the research is help infants)? Is it for them to respond like other children? If so, why is it acceptable to expect that of the autistic child and not of the dyslexic or blind one? In any classroom, a blind person has the right to ask a teacher or Professor not to make visual references in order that they can learn better. A visual learner also has a right to ask. Do you think this is hard to accommodate? It’s not. Teachers possess varying abilities and we can appropriate them to different groups of learners. Autistic learners are not offered this choice. They must learn to “behave” like “normal” people through ABA despite my own anechdotal evidence here at home that many tools, and an understanding of Adam, is the most helpful teaching toolbox of all.

Finally, dear fundraisers and researchers, if we were to genetically screen for autism, what percentage of new parents do you think, under the current bioethical climate (can I call it that?) will be the beneficiaries of “early interventions” for their babies? Is this marketing supposed to suggest that if we know the genes that cause autism we will understand everything there is to know about the autistic person, including how to teach them?

No matter what you think about “autistic person” or “person with autism,” let’s think about the bigger picture. Our children and the way they view themselves (hopefully as whole, entitled and able to give back), are the reason I celebrate Autistic Pride Day…every day. Please support and buy Jason’s t-shirt.

Never Too Late To Sign

Filed Under (Acceptance, Activism, Inclusion) by Estee on 15-05-2011

You can sign the Declarataion for the Support of Community Living Here: http://www.institutionwatch.ca/petition-app

This from the Canadian Centre for Community Living 2010 Report Card:

Improvement still needed…

• Among children with intellectual disabilities
receiving early learning and child care
services, 32% have been denied this service
at some point in the past.

• 30% of children with an intellectual disability
had to leave their community in the past
twelve months in order to attend school.

• Only 33% of children with intellectual
disabilities are in high inclusion school
settings.

• Children with an intellectual disability are four
times more likely than other children with
disabilities to be attending special education
schools (16% vs. 4%).

• 41% felt threatened at school or on the school
bus within the past year and more than a third
(36%) were assaulted at school or on the
school bus.

• 52% of young adults with an intellectual
disability (aged 20 – 29 years) are neither
working nor attending school, compared with
12% of those without a disability.

• Young adults with intellectual disabilities are
five times more likely than those without
disabilities to have no formal education
certificate.

The Morning After Losing Adam

Filed Under (Acceptance, Parenting, Safety, Wandering) by Estee on 15-05-2011

As you read yesterday, I lost Adam for about 10 minutes. It seemed a lot longer. When I returned home for the day, I was feeling down. I thought, just when things seemed to be going so well…another challenge. Then, my ceiling leaked from the rain.

Ah well, I said to myself as I opened my eyes this morning. At least Adam had the sense to re-enter that church all by himself. At least there was no tragedy. At least my roof isn’t caving in. Someone is coming to look at it hopefully later today.

I think it’s good to let the down go through us — to hibernate after an event like this. But I also reached out. I contacted every team member, my friends. I was so surprised by the deluge of support. I realized, that even as I think I’m alone, a single mother, I am not. I learned this by not keeping yesterday’s event to myself. I realized that I cannot do everything by myself.

I am really grateful to my friends, family and Adam’s support team who are always there for us, and even you readers who take the time to lend your support by commenting here and on Facebook. For me, writing is a way to survive, to think, to overcome my challenges. I cannot let them fester. Other people manage other ways. I manage this way.

I spent many years learning how to build a strong team of support. I realize that network has been carefully woven and I’m in awe of the time it took. I hope to be able to write a piece how I was able to create this web of support, and the trials of putting it together.

When we are building teams for our children, we have to look at good fits. We have to feel good about who is working with our children. For myself, I could not hire people who treated Adam in a way I did not want him to be treated. It was simply an intuitive way of parenting him. Building a team later became supported by what I was reading and hearing about certain therapies and ways people with disabilities have been treated. I never realized it, but I have a distinctive parenting style. I appreciate sensitivity because it suits Adam’s needs. I love kindness. I adore when people realize he is a person full of potential, despite his challenges. As I built a team to support Adam, I realize I also built one to support me in my ability to parent him. I realize my limitations and my need for others to help, and how we work as a unit. I am his mother. I am suited to loving him well. Although I teach him as a parent would, I am not a great teacher. I reach Adam by being gentle, not impatient. His interest in music and art is nurtured by my interest and activity. I’m good at a few thing and not good in others. When I think Adam needs to learn something I cannot teach, I am happy to hand him over to those who can give him those other gifts.

I ended the evening yesterday talking to one of my best girlfriends. She has a typical daughter. She talked about how she lost her daughter at the cottage. So many parents have reached out and told me their tales of losing their children — typical and autistic. When I rethink everything, I realize that exploring is a rite of passage. Adam wants to be independent — the very trait we want our autistic children to learn. He wants to explore, hide, and thinks excitable voices are really funny. I wonder if we target the autistic child for wandering, like so many other challenges, and forget about how the typical child does the same things as our autistic children do. The age ranges may be different, but sooner or later, it happens. Sure, I’m nervous about this and will be on top of it as will his team. Yet there is a side of me that thinks — tragedy averted, of course — that he made his way back into the church. He wants to explore and do his own thing. He tried to make his own popcorn the other day and wrecked my microwave. I mean, how many parents have the same story of their homes being near destroyed by a clever, well-meaning child?

It’s time to support Adam again and make a new plan. We have to avoid danger and we have to support his need to explore and be independent now. I just have to learn to keep up.

Losing Adam

Filed Under (Activism, Wandering) by Estee on 14-05-2011

I’m going to write this raw and unedited.

Have you ever been so scared that you literally wet yourself? I did today. I lost Adam.

I took him to Sportball. It takes place in a church — they don’t lock the doors. All the kids are special needs. The gym is in the basement. I usually go and his instructor has responsibility for a bunch of kids. We’ve not really had difficulty like this before, but I could see it coming. I ordered the shoe tags, a GPS, but they haven’t arrived yet. Adam’s father reported that Adam tried to bolt last weekend.

So I turned to Adam’s instructor to address the issue. In just one second (no exaggeration), Adam was gone. I knew I had to move quickly because Adam is so fast, but they tried to reassure me he was ok, so I thought they moved a little slowly. I ran around the entire church — full of rooms, nooks and crannies. The front doors to the outside were locked. But there were more doors. An alarm went off. I ran outside screaming for Adam, I ran back in to look in between pews. He was gone.

Someone called 911. I peed my pants, running and running, hoping my desperate voice would trigger his tiny “here I am,” voice, but nothing. One more run back into the main sanctuary, and there he was under the cross, peering behind the curtain, on the altar.

I grabbed him and couldn’t stop crying…sorry it’s hard for me to write because I’m starting to cry again. Adults came in to say that they saw him running outside the church. He could have run out to a very busy street alongside the church. He could have been really hurt. No one stopped him. No one thought of it. Even those who knew him. I guess people thought we must have been nearby.

I held him so tight when I found him on the altar. I’ve called my team and my parents because I need support right now.

Adam’s impulse to explore, especially go through every door, has become insatiable. I do have extra inside locks on every door of my house, and lucky too because I can see he’s trying to unlock the regular ones. I’ve managed to keep us safe and myself sane in my home, but now I see I have to deal with this aggressively and he cannot be left unattended. I’d also wish to suggest for programs for special needs kids (or maybe all kids) that the doors be locked so kids can’t just disappear this easily. It seems to be a huge oversight and a lack of accommodation.

I’m so glad I have him because after five minutes of searching and calling out frantically, I thought I was going to be one of those parents you hear about on the news. I don’t want to come that close ever again. Not only will he always have a shadow with him now, there will be more aggressive teaching about safety and more positive reinforcement for staying and asking for permission to explore. I also implemented intuitively (and later read) that it’s really important to take your kids on the same routes all the time. They will usually want the same routes and can either be found or will find their way home. As Adam ran outside, he managed to find an open door back into the church.

It was Adam who found his way back. I found my way back to him.

Early Mother’s Day Reflection for Autism Moms

Filed Under (Joy, Parenting) by Estee on 04-05-2011

As an only child and single mother to an autistic son, I have to be honest that I sometimes find myself grumbling about holidays. I know it sounds very cynical of me, but hear me out. Another hallmark holiday can make me feel left out. Our kids are supposed to make us cards, buy us flowers, gifts and tell us how wonderful we are. Usually, there is a husband to make the kids abide if the kids are too busy playing Xbox. I remember fondly making those cards and telling my mom how much (and still do) love and appreciate her. In my case, my dad didn’t always have to remind me. Adam can’t make me a card; at least not without the help of another person. So, another holiday comes and that’s the pang.

I can’t get rid of the holiday. Millions of people this Sunday will go out and buy flowers, and make their kids make cards for mom and grandma — another fuss. Don’t get me wrong, I think it’s lovely that people want to celebrate their family members. If I had gotten the date right this year, I may have even made a tea for my girlfriends and their mothers. Part of me does it to avoid self-pity. Another part does it because I believe in making celebrations out of just about everything, not necessarily on holidays. This Mother’s Day, I’ll probably visit my mother for coffee with Adam and I know she and my father will give me their good wishes.

As Mother’s Day approaches, I think of the daily moments I share with Adam; how much we’ve been through together and how much I wanted him. I waited until my late thirties to have him. Other’s have forced him to make cards and say “Happy Mother’s Day mummy… I wuv you,” and he repeats it obediently, hands me the card made with construction paper and crayons. Sure, I love the card and keep them in a special box, but I know he doesn’t care about it so much.

Today, he cares about the items he can make on his own volition. He cares about when I am there for him and can comfort him or love him just because. In return, I receive his voluntary hugs and kisses, his laughter, his smile, his pulling me towards him and saying my name. At night as I tuck him into his favorite blanket, he’ll say in his little voice, “don’t go.” In this house, Adam’s affection and his ability to express himself are like daily holidays. If your child has difficulty talking, you’ll understand these actions and the few words as the gifts that moms like us receive. Mother’s Day? I can see Adam laughing inside if he really understood the nuances of being forced to celebrate Mother. I mean, love is love. Period. He knows it well.

For us moms whose children cannot and may not make cards and say I love you this year, don’t despair. I hear you and I’m with you. Be proud of your mothering efforts and happy that we are moms of our wonderful children. I don’t know about you, but I never get the feeling that Adam doesn’t love me. Just because he can’t always express it in words, or as slick as a Hallmark card, I feel ocean waves of love and appreciation every single day.

That’s my Mother’s Day gift to myself, and to you.

ads
ads
ads
ads

About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.