Changes to IBI for autism in Ontario – ableism and misinformation run rampant

The Ontario Liberal government recently announced big changes to IBI for autism in Ontario and the response from opposition politicians, the Canadian media and many parents of autistic children has been deeply troubling to me. The policy announcement has unleashed a tidal wave of messaging which is ableist, exploitative and which marginalizes, stigmatizes and damages all autistic people.

Content/trigger warning – this blog post discusses Applied Behaviour Analysis (ABA) as an autism “therapy” and includes examples of ableist, stigmatizing language. The post may therefore be upsetting and/or triggering for some.

What is IBI?

IBI is Intensive Behavioural Intervention and was developed by Ivar Lovaas as “therapy” for young autistic children using the principles of Applied Behaviour Analysis. Many autistic people, parents and therapists have profound ethical and moral concerns in relation to using behavioural approaches as “treatment” for autism. I wrote an entire post on this issue: ABA and Autism – the thorny problem of control and consent.

What I’d like to examine here is:

  • How Ontario opposition politicians and the media are exploiting angry, fearful parents
  • That the messages politicians, parents and the media are spreading, damage autistic people
  • Absent ethical concerns, why IBI for autism in Ontario is inherently discriminatory and should be scrapped completely.
  • Some ideas on how the public funding for IBI for autism in Ontario could be more fairly and effectively spent.

To parents of an autistic child in Ontario

  • I am too – I have 10 year-old twin boys who are both intensely autistic. One of my sons is non-speaking. Both boys participated in IBI at a younger age – a choice I now regret.
  • I know you love your child and want the best for them.
  • I think the way the Liberals rolled out this policy change was very poorly done.
  • If you are one of the parents whose child will now not receive IBI, or will no longer receive IBI, I know you’re angry and fearful but please try not to spread messages that hurt all autistic people. Your child is not dead, dying or lost. With love, acceptance, patience, time and the right supports and services, your child will grow into their potential.
  • Buy and read Neurotribes by Steve Silberman. It may revolutionize the way you think about your child.

To autistic young adults in Ontario

  • I’m annoyed that the politicians, “experts” and media don’t appear to be seeking your perspective at all. If you’re interested in having your voice heard, please feel free to contact me.

To autistic people and their allies outside Ontario

  • IBI/ABA for autism has been the norm (in the U.S. in particular) for some time and is the only autism “therapy” that is covered by many insurance companies. If you’re an autistic self advocate or an ally to self advocates, please feel free to share your stories. You can comment on this post, contact me or share your thoughts/blog posts on social media using #AutismDoesntEndAt5
  • I’m particularly hoping you can share your views and experience on IBI/ABA for autism but also what supports and services you feel have been helpful and effective (if any).

To behavioural therapists

  • All of the therapists who worked with my children were lovely people. I’m not trying to put you out of jobs. I do think that if you presume competence and accept that autism is not a behavioural problem but a neurological difference, your teaching and consulting skills could be effectively and ethically deployed in the community rather than in segregated full-time work programs for toddlers.

Politicians and the media are uncritically amplifying and spreading a binary, ableist, unscientific message about the changes to IBI for autism in Ontario

  • Instead of balanced discussion which brings in all viewpoints (like this article about ABA from The Guardian last year), the message currently being uniformly presented is: either you oppose an age-related cut off of IBI for autism in Ontario (and you’re on the side of the angels) or you’re a heartless monster who presumably hates disabled children and their families. Examples:

  • The messages themselves are couched in the kind of language that hurts, stigmatizes and marginalizes all autistic people. It is simply not true that without IBI, autistic people are a tragedy, without hope, without a future or dead. In the above article, Tasha Kheiriddin, herself a mother of an autistic daughter, compared autism to cancer – the withdrawal of IBI is apparently just like withdrawing chemotherapy from a dying child. Here’s some more examples of tragedy-based messages, some being uncritically boosted by politicians and the media:

IBI for autism in Ontario - tweet from parent reads "Dear Justin Trudeau my 4 year old son politely asks you to end Kathleen Wynne's Autism Massacre!

Two male presenting children in winter coats, sitting in red chairs and eating cookies. One has an iPad. Caption reads, "My kids at Starbucks, eating cookies and (not) contemplating their hopeless future."

My kids at Starbucks, eating cookies and (not) contemplating their hopeless future.

  • Even if you have no concerns with the ethics or morality of IBI and are convinced it’s the bees knees in terms of autism “treatment”, there is still a science problem that no-one seems to be reporting. IBI is routinely termed “statistically effective” and the only “evidence based treatment” for autism. But these statistics are derived from Ivar Lovaas’ study of 19 children, published in 1987. Only 50% of those children were considered “recovered” by Lovaas. Not only has the study been criticized extensively, Eric Schopler for example believed that Lovaas had cherry-picked the study subjects, but no-one has been able to replicate the results.

IBI is discriminatory in its application

IBI is enormously expensive and yet all this funding is being spent on a very narrow sub-set of children. I believe that public funds should be reserved for supports and services which support all children and adults with developmental and other disabilities.

  • In order to qualify for IBI, you have to receive an autism diagnosis at a very young age. This excludes all other children who need services to support communication, self-help, learning and life skills – children with Fragile X, Down Syndrome, Fetal alcohol syndrome, cerebral palsy, intellectual or learning disabilities and more – you’re all out of luck.
  • If you look at the photos of children that parents angry about the policy changes are sharing, you will note a common theme. The majority of these children are caucasian and male. This is not because autism only occurs amongst white males; it’s because girls, as well as all children from black, Asian, Hispanic, Middle Eastern, Native American and multiracial backgrounds, are often misdiagnosed or diagnosed with autism much later in life. And as this recent study has demonstrated, even if children from diverse backgrounds do receive an autism diagnosis, there’s no evidence that IBI/ABA practices are effective for these kids.

What should we be spending public funds on?

I firmly believe that, in consultation with disabled adults, we should be supporting programs that are accessible and effective for all disabled people in Ontario, not just a small sub-set of autistic children. I also believe that services are best delivered in an inclusive environment in people’s homes, communities and schools. We need to develop strategies, services and programs that don’t just support disabled children; teens as they transition from school, as well as adults seeking housing and employment, also need services and supports which they are currently not receiving.

Current programs that are underfunded

  • Communication. I’ve written before about how this should be priority number one. I’m planning to write separately on my experience trying to get publicly funded AAC (Augmentative and Alternative Communication) for my non-speaking son but I want to make three points here:
    • My son spent 5 years on a wait list before receiving an AAC assessment. This is completely unconscionable. Communication is a basic human right.
    • If an autistic child is verbal, they do not qualify for publicly funded AAC support, even if they lack functional speech. In my view, this restriction needs to end.
    • Communication support is critical for helping all children with a developmental disability. The focus on behavioural therapy over communication support is completely misplaced.
  • Special Services at Home. SSAH provides funds for respite as well as integrated and inclusive recreation and life skills programs. My children were on the SSAH wait list for 4 years before we received any funding.
  • Passport. The parallel program to SSAH but for adults. The fact that SSAH funding is stopped and a disabled teen then has to go on another years-long wait list for Passport funding is appalling.
  • Occupational therapy.
  • Accessibility. We have to wait until 2025 for all provisions of the AODA (Accessibility for Ontarians with Disabilities Act) to go into effect. Even then, the act is mostly focused on physical barriers to access whereas for the developmentally disabled, barriers are more likely to be cognitive inaccessibility and a lack of access to communication support.

Other programs

  • Last year, in assessing how we could prevent further deaths like Guy Mitchell’s I wondered why we don’t provide one institutional point of contact that would be consistent throughout a disabled person’s life providing information as well as facilitating and coordinating access to services and support.
  • One of the frustrations I felt after my children attended an IBI program for two years was due to their being segregated for so long. I had to work hard to integrate them back into their communities and fight to ensure they were provided with an inclusive, safe school environment. This process makes no sense to me – why aren’t we encouraging integration and inclusion from birth onwards? One of the best programs I participated in was Jumpstart – a therapist from the Geneva Centre came to my home and we worked together on issues like adapting our home environment. We already have Early Years centres in Ontario, why aren’t we running inclusive language and life skills acquisition programs in these environments?

Whatever program changes are ultimately adopted, my main hopes are:

  • The real stakeholders and experts on autism (i.e. autistic people) start to be sought out, heard from and heeded.
  • That everyone stops using ableist, harmful rhetoric. This language has profoundly negative consequences – autistic people are further marginalized and thereby denied access to housing, jobs and more; the fear of autism as a hopeless, tragic condition ultimately leads to society tolerating the abuse and murder of autistic and other disabled people.
  • For politicians and the media to stop exploiting vulnerable people and to bring a more thoughtful and critical mindset to this issue.

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9 Responses to Changes to IBI for autism in Ontario – ableism and misinformation run rampant

  1. Mandy April 14, 2016 at 9:08 pm #

    Thank you for writing this! As an autistic parent of an autistic child, it has been hard listening to everything on the news and hearing what parents are saying about autistic people.

  2. Sheila N. April 14, 2016 at 9:12 pm #

    Oh the services for our children, including children without autism is terrible. My daughter does not have autism but has many other needs. We waited a long time for SSAH as well and I have a friend whose child turned 18 and now has nothing again—that is so wrong. I am happy now that we receive SSAH as it helps pay for many of our activities that we otherwise would not be able to do with our daughter. AS for OT, PT and speech services for our school aged children–it is so minimal it is a joke. We have been lucky to have a OT consult once a month during the school year since my daughter entered SK and the first year of speech received through CCAC was the best we got (20 sessions for a severe-profound speech delay) Since Jan 2015 we have received a whole 10 sessions and she was to be picked up again in March and we are still waiting for that. It is disgusting and we try our best to supplement with private until our benefits run out…which happens quickly at $65 for 1/2 hour. We also keep getting brand new inexperienced speech therapists through CCAC to work with my child. I have become increasingly frustrated with the lack of support my daughter has been receiving all around and feel that the systems are failing her. I will stop ranting now!! 🙂

  3. Diane April 15, 2016 at 12:54 am #

    As always, thoughtful and enlightening coverage of a difficult topic. I just posted earlier tonight about my mentor. I met him when he was in HS and I was pregnant with my daughter. Because I knew him, the bar was always high for my daughter. He now has his own podcast series called Special Chronicles, giving respect and a voice to people with special needs. Inclusion. Inclusion is full circle, benefiting all of us. Keep on self-advocates. We all need you. If you need encouragement, check out Special Chronicles. http://specialchronicles.com/podcast178/

  4. Tammy Hadley April 15, 2016 at 8:32 pm #

    Very well written! I am in what I call a cycle of ABA therapist. Every year or two I get a referral for my son to receive therapy. I express my point of view and am always encouraged to give it another try. I go through the motions and always end up asking myself WHY are they even here. Most of the time we ( meaning myself and the BA) end up sitting on the sofa talking why my son is in the other room. If we do get a hands on therapist we end up with one to two hours of pure chaos that does not end when the BA leaves. There has to be something better for our children. My son has other health conditions of which we are told to avoid stressful situations. I am not saying that the BA’s are not helpful and they are always compassionate and genuine. I just believe in my heart that there has to be something better.

  5. Danielle April 17, 2016 at 8:21 pm #

    This is wonderful, well thought out, and specific. Thank you. I have so many issues with Autism programs in Ontario.

  6. Ian April 17, 2016 at 9:27 pm #

    I appreciate the expression of different views. Some very valid points on supporting all types of disabilities and not over-generalizing care. I would caution about attempting to label some broad everyday language as ableist, as it is just a label like those you wish to remove. The language we use is gradually changing for the better and that is true cultural progress. I do cringe at hearing people say their child died or their lives are over, though, as it is very self piteous and self centred.

    My son had a very positive IBI experience where integration was always a part of his programming. Haldimand-Norfolk may have the best Autism services manager in Ontario. She is honest about what IBI is and inclusive of parental views. All his treatment was after 5. He would still be a lovely young man if he had not had this therapy, but its effectiveness is undeniable when delivered properly to a child with honest and caring parental oversight. It definitely will not benefit all children with autism as no two are the same. If the therapists and parents are honest, those children who see little benefit from it will leave the program before too long. That being said, better integration and support services need to be beefed up to properly support those that don’t excel in IBI.

    The opportism and political gaming is absolutely regrettable and loathed by most in my view. However, when politicians absolutely refuse to engage a community on legislation that has immense effect on their well being, playing dirty seems necessary. Until our democracy improves significantly, I suspect we will always need to be prepared to tackle politicians’ ignorance head on with outrageous zeal.

    Nice discussion.

    • OMum22 April 17, 2016 at 9:49 pm #

      Ian, if language is ableist then I will call it ableist.
      I could say a lot in relation to your contention that “it’s effectiveness is undeniable when delivered properly to a child with honest and caring parental insight” – but I will refer you back to my post on ABA as most of it is covered there. I’ll say two things here – if “effectiveness” is your yardstick then I’m not sure how you explain the data showing that IBI simply isn’t effective in older children. In fact, the research into how autistic people learn seems to finally be catching up with what autistic people have been saying for years – that the techniques used in IBI/ABA are not only ineffective, they hinder an autistic person’s ability to learn.

  7. Chuck Bradshaw April 17, 2016 at 10:17 pm #

    I was misdiagnosed with autism in 1978 and was subjected to the classic Lovaas-style ABA (restraint, electro-shocks, etc.) in a residential setting for only a few months. I was considered “cured” after 3 months because I was totally compliant. It took me almost 20 years to deprogram what I was forced to do. I wasn’t allowed to relax, take time for myself or even just space out to escape what was happening. I still have nightmares and issues with certain things at the age of 40.

    ABA is very static, so what is “learned” cannot be easily “unlearned” or even “adjusted” to accommodate the changes of adolescence and adulthood. If behavioural therapy must be used, why not cognitive behavioural therapy? This teaches a person to cope with discomfort on the person’s own terms. The person then uses his or her own methods to help themselves through tough times. It is more empowering and easy to adapt throughout life because it is conscious. ABA is programming of the subconscious through repetition and is thus not changeable through the conscious mind.

    I’ve been assessed since that time and I am nowhere on the autism spectrum. However, I do suffer the effects of ABA and the PTSD that came from it. It’s not therapy. It’s animal training. Therapy would ease the issues that cause discomfort and illness. ABA/IBI is simply torture and I do not believe this should be called a treatment. (At the very least, putting a toddler through a 40 hour work week of strain is not exactly helpful.)

    People who are trained through this method will comply because compliance is better than pain, repetition or just plain exhaustion. Is it helping? No. It tells a child to ignore pain, illness and discomfort in the name of acting normal. At it’s very least, it’s an educational tool. At its worst, it’s abuse.

    • OMum22 April 17, 2016 at 10:45 pm #

      I’m so sorry about what happened to you but thank you very much for sharing your experience here.

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