The experts all agree: (and you know when I say 'experts' I mean the mom's and dad's of autistic children and adults on the spectrum) autism is a different experience for everyone. Those other experts: doctors, therapists, teachers etc, they would also agree. So, since we are all in agreement, I have a few questions beginning with: Why the hell do people continue to posit that ABA is the right therapy for EVERYBODY? Why do governments and insurance companies offer funding (if any) for ABA only? I have written about how I feel about ABA before (click here to read about that), but this post is not about my problems with ABA and the methods used under this model. This post is asking rather simple questions: If our children run from one end of the spectrum to the other and beyond, why are we forced to rely on only one method of therapy? Surely, you've heard of some of the other therapies/interventions out there with EVIDENCE behind them: Stanley GreenSpan's Floor Time Son-Rise The Hanen Method The Early Start Denver Model Pivotal Response and Incidental Teaching (Under the ABA Umbrella, see I am not totally unreasonable) SCERTS I am not asking the government to sink money and efforts into a method that hasn't been thoroughly investigated. I understand the scientific method. I understand that you NEED data before you will back a different model. I am trying to tell you that these methods have DATA behind them. They have peer-reviewed studies behind them (the kind you need) and they have anecdotal data collected from parents who GET IT (the kind I need). That should be more than enough evidence for you. As we watch our children grow and develop we are panicking because we cannot access or afford the most progressive treatments out there. Can you imagine how sickening that feels? Please treat our children like individuals. Isn't that the very essence of inclusion in this province? Why do you allow agencies, that segregate our children to a building to work on ABA therapy (which is really IBI therapy) for up to 30 hours a week to exist? Does this not represent everything your inclusion policy is NOT? Why do our pre-school children with autism NOT FIT INTO YOUR FULL INCLUSION POLICY? I've been asking these same questions for a year now and I am still waiting for answers. Anytime now….
2 Comments
I am dismayed and appalled at the ludicrous position taken (sic) by many other supporters of ABA, who claim that ABA is the only scientifically validated treatment for autism. Not so! That position is not only false, it is absurd. Dr. Bernard Rimland, founder, Autism Society of America On Monday Alex and I will meet with our local MLA Blaine Higgs, who also happens to be New Brunswick's Minister of Finance. We have requested this meeting with the intent to point out the issues facing the autism community in New Brunswick. We would like to highlight the major concerns regarding autism services, ranging from diagnostic issues, early intervention and school-aged children to adults on the spectrum. Of course, this is a huge undertaking and we have under an hour to present our thoughts but nonetheless we are grateful for the audience. Our main issues will be drawn up and detailed for Minister Higgs but I would like to lay them out here as well. I run most of my thoughts, on all things autism, by the readers of this blog and your comments have always been much appreciated. Maybe, you could help me articulate my thoughts for Minister Higgs. If you don't live in New Brunswick, please let me know what works and does not work in your Province/State. I guess it is clear, by my choice of an opening quote, that I feel funding only one treatment (ABA) and touting that treatment as the only evidence-based, scientifically sound treatment for autism is a major concern. If you google "Autism Services in NB" you will come across a few articles detailing how New Brunswick is a leader in the field. They will say things like, "Children in NB receive 20 hours a week of ABA," (15 if you're lucky). "Children in NB can receive a diagnosis of autism as early as 18 months," (it takes that long for some people to even get in to see a specialist) and "services can be implemented in a matter of weeks," (not even close. If you're a loyal reader, you know that our own Kate waited for 177 days to receive service.) Essentially, New Brunswick has been patted on the back in recent years for great strides in implementing autism services and intervention programs. It is time to stop resting on those accolades and look closely at our system once again. Are we truly servicing the autistic population to the best of our abiltiies? (yes, I said autitistic! I have decided that person-first language is currently an argument I am not willing to fight when so many more important issues are looming) The bottom line is: Why do we call it a spectrum and then offer only ONE treatment? Here is what I want Minister Higgs to know: 1. The hospital corporation has been amazing. Our doctors, our OT's, and our Speech Paths have been top drawer. Give them MORE resources and give them above standard training and education in their fields. Hire more of them so they are not spread so thin that they spend their evenings feeling guilty for never having enough time/energy/resources to properly serve their clients. Allow these PROFESSIONALS to be flexible and varied in the services they deliver. They are amazing at what they do and they are in the field everyday. Allow services to be needs-based rather than diagnosis-based. TRUST the medical professionals when they tell you someone could benefit from a therapy. 2. Please, please, please DO NOT put all your eggs in one basket. Allow other therapy options for early intervention. See, Pivotal Response, Floor Time and Son-Rise to name a few. Explore art and music therapy and look at the whole-body approach. Allow the PARENTS and their respective teams to direct the funding to therapies they see as most legitimate and suitable for their children. DO NOT marginalize parents in this process. We know our children better than a room full of autism research scholars. We are vital to setting up appropriate treatments. Listen to us. 3. Boost the services that school-aged children receive. Services dramatically drop off once a child enters the school system. This is unnacceptable. Allow teachers and EA's to be trained in VARIED autism intervention theories. Give us MORE resources and more bodies so that we can feel effective and proud of the work we do with special needs children. 4. Finally, and I don't like to use that word because this, in no way, means that our needs can be fairly expressed in four small paragraphs, but there is a crucial need for policy-makers to implement services that treat autistic individuals across their lifespan. There it is in a nutshell. What am I missing? What can I add? What do you think is imperative? Don't get me started on services for the siblings of kids with special needs because that will have to be for the next meeting! Thanks for listening and please feel free to leave comments below or send me a private message. Kate's therapy has begun! She has a sweet autism support worker and a team we are confident will help her succeed. This kind of thing is always tricky to talk about for me because of how our treatment philosophy differs from that of the province but regardless of that, we are aware of how lucky we are that we live in a province that provides treatment to children with autism until they reach school age. The service dramatically drops off once the child enters school but that is for another post. This post is to celebrate that after 177 days of waiting; our Kate is finally receiving treatment. We are working with her team to modify the treatment plan to suit Kate. We also pay a private therapist to supplement Kate's treatment. Things are starting to come together. While it is not ideal for us, it is a step in the right direction. We will keep fighting to make sure our province expands treatment options but for now we celebrate that Kate has made it off the waiting list. We are so relieved we had a dance party! I am feeling down tonight. I know I will have to run into some of you readers in the grocery store and it really makes me not want to write this because I don't want to people to think I am always feeling this way. There are moments when I feel down. I think that is fair to say about everyone in some way. Today is one of those days for me. I may not even publish this post. I am looking around the house and making note of how autism has taken over our lives in so many ways. There is a stack of books on my beside table with titles like "The Autism Revolution" and "ChallengingThe Myths of Autism", among others. Gone are the stacks of books I would pick up on a friend's suggestion or while browsing the bookstore." Our calendar is covered with Kate's upcoming appointments. Much of our conversations are centred around who will be able to take the time off work to take Kate to these appointments. Gone are the notes about swimming lessons and playdates. Our cupboard is full of vitamins and supplements and gluten-free and casein-free foods that we are trying desperately to get her to eat (autism parent's, you know their diet is limited on a good day.) God, do I sound like I am complaining about helping my little girl? Even as I re-read what I just wrote I am feeling guilty because I am essentially saying that Kate's autism is taking over our lives and it is making me sad. How awful is that? How sad she would feel if she knew I was thinking like this. I really don't mind reading and researching and fighting for Kate all day long. I guess, in some ways, I wish I didn't have to. I think the neurodiversity movement will jump down my throat when I say this, but I wish Kate could recover. I wish she didn't have these challenges. Yesterday when Alex and I were driving with Kate he told me how when he is driving her to daycare in the morning she will yell out "GO" when he gets to the stop sign at the end of the road. I made a joke about her getting her licence someday and being a crazy driver. He didn't laugh and when I looked at him I could see his face was so sad. I knew what he was thinking. Will Kate ever get a licence? Will she ever be independent? Kate has some language and we are so grateful for that. But, how far will she go? How come no one will say the words high-functioning to us? We have been throwing that term around at therapy and doctor appointments waiting to see hear it said back to us and it hasn't happened. What does that mean? I am too new in the game to understand all the semantics that are tossed about on the autism blogs, groups and sites. I am getting a sense that people are very emotionally tied to some terms used in connection with autism. I guess 'high-functioning' is that term for me right now. Kate is still so young. We are hopeful that she will gain the skills, once treatment begins, to live a 'normal' life. We struggle with thoughts that she won't. One of the shittiest things about autism is that you are robbed of the comfort you get in assuming your child will grow up and become independent and start a family of their own. I didn't even realize that this idea was a luxury. I know that not all neurotypical kids grow up to become independent members of society with little families of their own but I do know their parents at least can make that assumption when they are staring in their little toddlers face. They can take some comfort in the fact that they are born with the things they need to do this. I'm jealous. I know I should not be wasting time feeling sorry for myself and get back to working on organizing her treatments but it is just kind of pouring out of me now. I definitely have some weak moments and this is one. And now that I have brought you down I am going to cheer you up with this little slideshow of really cute baby animals. You're welcome. *Update: After I wrote this I came across another post in a great blog called "Life His Way". Check out that post here. It answered me in the nicest possible way. |
Happy Mail to:
GoTeamKate 27 Wellington Row Saint John, NB E2L 4S1 I've been a tad overwhelmed with teaching Kindergarten during a pandemic (masks and all) butttttttt, I have not forgotten my sweet patr
https://www.patreon.com/sunnyandsinclair
https://www.patreon.com/sunnyandsinclair
Archives
April 2022
AuthorGrace and Kate's mom. (Shanell) |