You are the first people most parents meet after getting our child’s diagnosis. Therefore you have tremendous influence on how we view autism, what that means or doesn’t mean, what services we seek, and how we then view and treat our child.
That’s a huge responsibility.
The onus is not entirely on you, of course, but don’t kid yourself, you have the power to change the course of a child’s life and their family’s with your knowledge and what you tell their parents. If you don’t know the answer to a question, do not pretend you do. Do not rely solely on whatever university you went to, or the medical journals you may subscribe to, the most recent statistic, medical study or your colleagues for information.
If you’ve been taught a particular therapy or teaching method is the only scientifically proven method to “treat” or teach Autistic children, find Autistic people who were given that therapy or method as children and learn what they have to say about it. If you find a number of Autistic people are speaking out about a specific treatment or method, saying they have post traumatic stress as a direct result, reconsider your position. If you still feel this therapy is important to pursue, ask yourself why and at the very least, inform the parents who are considering this method that there are Autistic people who believe it was damaging to them. It doesn’t matter whether non autistic people and professionals agree, you have an ethical obligation to tell parents that this treatment or method has caused damage to a great many.
If you think you know, if you are convinced you are right about some aspect related to autism, do more research and make sure what you think you know, is in fact true, if it isn’t or if it isn’t clear, then do not present it as though it is the “truth”. I don’t care how well known or famous you are in the field of autism, if you are not engaged in reading and talking to Autistic people outside of a clinical setting, you have more to learn. And do not be afraid to admit when you don’t know something or if you find you are wrong about something you previously thought to be true. Most of us would prefer being told by a professional that you don’t know something or thought you knew something, but now realize you were wrong than to be given incorrect information. There’s massive amounts of incorrect information out there. Please. Don’t add to it.
You have a responsibility, not just to Autistic people, but to those of us who are their parents and to your profession to read everything you can about autism and what it means to be autistic. If you’ve never read anything written by an autistic person, now’s the time to do so. If you cannot bear the idea of doing so, if you believe your various degrees are enough, if you feel annoyed, believe I’m being presumptuous by suggesting you do more, then find another profession. You aren’t doing anyone any favors by continuing to pursue a career in a field that has so few concrete answers but that you are convinced you know all there is to know.
Even if you’ve read one or two books, maybe seen the latest documentary featuring one or two autistic people, it’s not enough. You need to read blogs and books written by non-speaking Autistic people, there are more and more of them being published every year. You need to read the writing of people who speak, can sometimes access language, access language all the time, but do not say what they intend, people who have intense sensory sensitivities, those who are hypo sensitive as well as those who are hyper sensitive and those who have a mixture of the two.
Examine your beliefs: Do you believe that non speaking Autistic people cannot speak because they aren’t trying hard enough or because they do not have anything to say? If someone’s facial expressions are hard to read, do you believe that means they do not feel emotion? Do you think Autistic children lack empathy? Are you convinced that Autistic people are unreachable? Do you believe Autistic people have no desire for friendship, lack the ability to love, cannot understand what is being said and written about them? Do you think that if an Autistic person acts more like a non autistic person they have “recovered”? Do you believe this is a worthy goal?
Please. Do all of us a tremendous favor. If you are entering the field of autism or are an educator, therapist, doctor or professional in the field, in whatever capacity that may be, question everything, read, ask questions, examine your beliefs. Learn what so many have gone through at the hands of well-meaning professionals. Remain curious, stay open to new ideas and continue to adjust what you believe.
I was terrified when we received my daughter’s diagnosis. I knew very little about autism and I looked to all of you for answers. The answers I was given I’ve since learned were mostly incorrect. Because of those answers, we made a great many mistakes. Mistakes that hurt our daughter. Other parents do not have to go through what we went through. There is so much great information out there, but often finding it can feel overwhelming and impossible for parents. You have a great deal of power to affect how families think about and respond to their child and their child’s diagnosis. You can help so many families help their children in ways that are respectful, by honoring them and their neurology and not making them feel they are broken or are to blame for how society misunderstands and treats them.
To those non autistics who this letter does not apply, you who have dedicated your lives to helping children like mine, I thank you.
Rosemary Crossley, Soma Mukhopadhyay, Christine Ashby, Anne Donnallan, Douglas Biklen, Mary Schuh, Leah Kelley, Pascal Cheng, Harvey Lavoy, H. Markram, K. Markram, *Marge Blanc, Susan Marks, Paula Kluth, Char Brandl, Cecilia Breinbauer, Phil Smith, Barry Prizant *do not have photos* and so many others, thank you.
Emma's Hope Book 
As an educator …. Amen. Thank you for this very wonderfully written piece. I will be sharing it with many others!
Thank you Julie. I didn’t want it to be too harsh, but boy am I getting tired of hearing from people who are professionals working with Autistic people and children, who claim knowledge and then through their comments it is clear they’ve drunk the same kool aid along with everyone else.
That is so right. good work to all the educators that care enough to grow and learn the craft of educating.
Beautiful, I wish this could be published on the front page of every paper, read out loud on the radio and on TV.
(((Shenny)))
“I don’t care how well known or famous you are in the field of autism, if you are not engaged in reading and talking to Autistic people outside of a clinical setting, you have more to learn.”
YES! This is the best! Pat yourself on the back lady!
Thank you Kelly 💕
Thank you so much for this. I have no idea if the professionals involved with my child have ever read any work by autistic people, but this has inspired me to ask them! When I realized my child was autistic I read everything I could get my hands on, but it was only when I discovered the writings of autistic people that I truly started to learn.
Yup. And quite honestly if we parents are reading more than those who are making a living at this, it begs the question, why aren’t they paying us?
Fantastic post. I’m tempted to copy it and send it to every doctor my daughter has ever dealt with. I have found educators and therapists to be far less presumptuous and open minded when it comes to my daughter’s autism. Heck, it was a physical therapist who first noticed her scoliosis and insisted we should have it checked, which eventually led to her Rett’s diagnosis!
I would so much rather hear “I don’t know” than what I’ve heard for so many years – “This is the standard treatment, but it’s pretty much hopeless”.
(((Ang))) Hey when you get a chance, I want an update on YOU!
We were very lucky to have a good doctor diagnose my child, at 3. I will never forgot those early interactions. Or how the doctor really, really made it clear that my child had a mind that worked differently, but was not broken. The we should always assume competence.
I suspect, on some level, that the MD is not ‘neuro-typical.’ And that this makes a huge difference.
The best psychologist we had (the one who diagnosed my son) has an adult daughter with a disability (not sure which, but it doesn’t matter). She had great understanding and compassion.
Oh I envy you! That really would have made such a difference to have heard that right away.
When my son got his diagnosis shortly after his second birthday, I researched autism therapies in depth (in fact, reading up about autism for him, showed me that I’m on the spectrum myself!) I’d read about how ABA was THE therapy, but it seemed like a really bad fit for my son. Being constrained to sit in one particular place (such as a doctor’s waiting room) is enough to bring on a meltdown. I couldn’t imagine trying to make him sit down and go through hours and hours a week of ‘therapy’ – but I also didn’t want him to miss out on something that might help him.
Thankfully, I discovered this very interesting article on the science and subject of ABA http://www.sentex.net/~nexus23/naa_aba.html It’s fairly long and quite academic in style, but well worth reading. Especially when you discover that the scientific support for ABA working is based on the use of aversives, which have (mercifully) been removed from most applications of the therapy.
Michelle Dawson is great and wow has she gotten flack for writing that piece you’ve linked to. I included that link in a post I wrote over a year ago, entitled Tackling That Troublesome Issue of ABA and Ethics. https://emmashopebook.com/2012/10/10/tackling-that-troublesome-issue-of-aba-and-ethics/
It’s one of my most widely read posts to date. (I can’t say popular, as so many were outraged by it) but it is definitely one of the top five posts with the most views to date.
Thank you, I’ve just read your post. Yes, it is a very emotive issue. In general, I try to let people decide for themselves – but I do think it’s important that people hear that there ARE alternatives! Perhaps a child who thrives on order and routine would find ABA worked for them.
My son is an agent of chaos! He would almost certainly regress under ABA – but responds really well to attachment parenting & intensive interaction. He’s 3 now, and I’ve been concentrating on connecting with him and making sure he feels loved, accepted, and included. Going to nursery with other children has been fantastic for his sociability, and though he’s non-verbal & has cognitive delays, motor planning & sensory issues – he’s bright, happy, and wilful – and he is very sociable for a child on the spectrum.
At home and at nursery, everyone accepts his differences and does their best to include him. He’s blossoming in that kind of environment. It’s just mummy instinct – but I can’t help feeling that the most important thing to work on at this stage is making sure that he WANTS to connect with other people. All the other stuff will come with time.
As a former educator I was thrilled to read this. Bravo!
Oh I’m glad to get this feedback from you, particularly as you were once an educator!
Wow! This needs to be summarized in some kind of bullet point form and hung in every pediatric office in the world!
Thanks honey. XX
I am passing this one on to the teacher who teaches the autism classes at UW Milwaukee. If her students learn nothing else, this should be it.
Oh thank you so much Beth. Appreciate it.
A public service announcement in support of this post:
The dominant medical and popular models of autism (lack of theory of mind, lack of empathy, lack of mirror neurons, lack of self-awareness, stuck in own world, etc.) do not even make any sense.
Literally none.
I only even figured out that I was autistic, by meeting and reading the work of autistic people whose experiences corroborated my own. But when I had been trying to explain my experiences to professionals, without using the word “autism,” (because I didn’t think it applied to me, because almost nothing I’d read about autism from a non-autistic perspective was true of me), they didn’t have a clue what I was talking about.
That’s how bad the gulf is between what most professionals believe/are taught about autism, and what the experience of being autistic is.
I keep thinking that gap is closing, but then someone tells me some horror story of trying to get help, or having to go to the hospital for something unrelated and are treated as though they were incapable of understanding or are refused treatment because they’re Autistic and I’m just astonished all over again. Ugh…
Me too–I get a little insulated in our blogging/advocate community and think things aren’t so bad…and then I hear some stunning piece of ignorance from someone out in the world.
I must have went to an odd school because what we learned about autism has stood up well over time. There was a strong focus on neuroscience there and we were always being told that for most things barely anything was known to a good scientific threshold. For autism I had the mixed fortune of having a behavioural prof who had worked with Betelheim and thus had footage of a study of such heart breaking ethical issues disguised as a ground breaking study it would forever be in my mind.
If I ever get my PhD I guess I will be the complete package as far as having access to both kinds of knowledge but it is hard to sit in a room where people are making guesses about your reality or even one where they are being educated about it and seeing them burst into laughter about things that are not funny (as is the case at conferences where there is some pressure to be amusing I guess…)
Well, I for one hope you do get your PhD because you would be, by far, the most knowledgable and compassionate, not to mention insightful person in the field.
It’s the hoops to jump through to even apply where I need support. I had set 2014 as when I would go into grad school but with everything they say they need to do with my body this year 2015 is more realistic. I won’t have much of a career but Dr. has a nice ring to it and then maybe people will believe more of what I say..
Hi,
I am so glad I started reading blogs and articles written by autistic people and their allies. It has help me connect and understand my autistic students so so so much more than my university education did. In fact most of the times I feel I have nothing more to do than be an ally and an advocate for my students. This has made me so much more happy as a therapist, I have a relationship with my kids without constantly thinking how I can change them. I truly value your blog and many others I have been introduced to and I am always sharing them with parents and professionals I do trainings for.
So glad Prathma. I know it’s made all the difference for us!
Thank you for this letter I am a mother of a13yr old boy who is autistic and non verbal ,I agree with every word you have said I too ,have spent a lot of money ,and time ,and energy ,believing so called professionals ,and it has not got me or my son anywhere much ,now my interest is reading books or anything I can get my hands on from autistic persons ,who else can give us a better insight but them ,I cannot get enough of them ,I am actually reading one now by Naoki Higashida called( the reason I Jump) I am learning, more from this book ,than the last 11 yrs.
put together . out of all the numerous therapists and teachers who came into my sons life only one person looked past his disability and saw his potential and that is rosemary crossley ,and I will be forever grateful to her for giving my son dignity ,I am privileged to know her ,a truly remarkable human being .
Ido in Autismland is another great perspective written by a non-speaking Autistic teenager. I particularly like Ido’s book because he is very specific about what he went through before he could communicate by writing.
He talks a lot about wanting a cure and refers to his autism as a disease and illness, and while that was really hard for me to read, (I’ve had to work hard at reversing that thinking) it also gave me a better understanding of what he, specifically is talking about – his body/mind issues and how they affect everything he tries to do.
I had left a comment yesterday but it got eaten I guess 🙂 I am determined to go back to school in the next year or two and get a diploma which will place me as one of the first people these confused and lost parents meet. I want to work with children (and their families) and show them the wonder and intelligence and if anything else to presume competence. Incidentally that was my lifelong dream (since about 14 years old) which kept getting derailed and I think Sophie came to me to tell me (among other things) get on with it already!
Oh I hope you do! We need as many therapists and educators out there who are able to think about all of this differently as we can get!
Love this so much. Have needed this as a handout in more than one instance, particularly a few weeks ago lol ;P xo
(((Bird)))
Yes, this! 1000 X THIS!
“You can help so many families help their children in ways that are respectful, by honoring them and their neurology and not making them feel they are broken or are to blame for how society misunderstands and treats them.”
Another fabulous and much needed article Ariane, and I don’t really know what to say, but that I am absolutely honoured to mentioned!
Hugs and love and appreciation for you and all that you do. ♥
Leah
Right back at you Leah. 💕
This really resonated with me as a teacher and a mother of 2 aspies. I think to myself about my colleagues, “If your kid was acting in a certain way because of ADHD (when a student has it with what is obvious sensory issues a teacher has no idea about–they do not teach us this–aspergers has made me a better teacher), how would you want your kid treated? Unfortunately some teachers start to think they know everything in the field and about kids and don’t really listen or think a kid needs our help and understanding.
Right, if what is being taught is wrong, or a great deal of it is wrong, then we respond to what we were taught, even though the reality is different. It takes a lot to undo misinformation…
It’s such a coincidence that you write this I wrote a post similar to this a few days ago – http://nisha360.com/2013/10/day-1139-message-medical-professionals/ – what you say is so truth people in contact with kids do affect the way the parents see the kids and how the kids see themselves.
Just read your post! So great Nisha. Yeah, we humans always want to know what the future holds, but have demonstrated time and again how we mostly fail at predicting much of anything.
this posts covers so much and it is such an IMPORTANT point – the impact of the ‘messenger’ and how ‘your team’ of professionals sees and approaches autism is SO important!! – but i have read something about compliance here and lots about meltdowns and non-cooperation elsewhere, i have to share something. we did not have ‘early intervention’ or ABA for my son as such, as he was a dream toddler, very verbal after a little pause (didn’t think about it much) and his autism actually only ‘came out’ when he started school.
but i have since had my share of professionals presenting a completely different view of autism than mine, be it the initial paediatrician who confirmed the diagnosis but then as first and only “solution” to the behaviour ‘explosion’ we were facing proposed medication “to take off the edge”, or the head of special needs who after incidents of bullying that lead to my son hitting another boy sent me links for parenting courses…
I am often explaining to people how my son’s oddest and most extreme behaviours are all REACTIONS to things he cannot cope with otherwise, or the behaviours are an EXPRESSION of something he cannot express in any other way at that point. Non-professionals often are more open to actually ‘get this’.
But before I even read this post, today I read something in my study material for aged care (here in Australia). the RIGHTS of elderly people, the ‘clients’, have become very important over the last decade and the ‘client-centred’ model of aged care is the philosophy they try to teach now to change attitudes of the staff. There was a paragraph that struck me as very transferable to how teachers and other professionals should deal with autistic kids in case of ‘non-compliance’, a term that seems to be generously used to rate the “success” of one or another intervention…
Let me know if you feel that this rings a bell, for me it did..
“IF the older person refuses any intervention, it should be documented in such a way as to identify WHY they refuse and the outcomes. Too often instances of refusal are documented by stating “non-compliant with treatment” which, whilst correct, can be misunderstood in its intent and sets the person up to be seen as “a difficult client”; it is to be avoided at all costs”
This quote reminds me of something I read recently about parents opting out of standardized testing in schools. It was written from a lawyer’s perspective for the Board of Ed. and was about how when a parent opts out of testing, they urge staff to find out why. (Which I thought was kind of funny, in that it seems obvious to me that to opt out is a protest of a bad policy, but this didn’t seem to occur to the writers.) Again, it’s this idea that if we refuse to do what is expected of us we are being troublesome.
Amen. A thousand times amen.
Excellent blog. Yes, we are learning so much about autism each day… not sure if it’s worse to be given misinformation or to just be told, “oh your child has autism, have a nice day,” and sent on your way… maybe the misinformation is worse because, even though I had to figure things out on my own (fifteen years ago), my child was always a whole person worthy of love and everything was done for his benefit and growth. Best of luck to you on your journey!
Reblogged this on Hiraeth.
Thank you!
As an OT I’ve had the chance to work with a number of kiddos with autism, many of whom are newly diagnosed, some of whom enter diagnosis at our urging. And I absolutely agree with this post. It has been SO helpful to my practice to read books, blogs, articles, etc., by autistic authors and parents of those on the spectrum. It has completely changed my view and even my approach to working with the kiddos on my caseload. I know I still have a lot to learn, but am excited by all of the excellent information that is being made avaialble!
It’s the same for any disability! The so-called professionals who have anything to do with disability think they know everything and so terrible things are sometimes said which can discourage people with a disability or their parents are from trying.
Getting such a positive responses from my repost of this column on https://www.facebook.com/pages/Raising-a-Sensory-Smart-Child/103533493306. Your voice is so important, Ariane. Thank you a million times over for saying what needs to be said.
Thanks so much for sharing it Lindsey! Really appreciate it!
This is absolutely wonderful. As both an autistic adult and a professional working with autistic children, I appreciate every word of this message. Thank you so much for this perspective that I can share with my classmates, professors, and colleagues who feel I take the subject of autism acceptance too personally.
I love this blog post so much! I think sometimes as professionals, it becomes the daily occurrence, almost the mundane if you will, to give parents news that their child has a delay/disorder. For myself, I never take for granted the gift that is bestowed upon me to in these moments. I can talk and overload parents with information or I can listen and try my best to guide them in whatever choices THEY want to make for their child. Regardless of how I feel about certain therapies (ex. I have a client who is currently participating in many many hours of ABA weekly…cringe…and I see the difference between his interaction with my therapy vs. behavioral therapy, but I can only support parents and demonstrate how his performance is so positive in our speech sessions), my goal must always be parent support and to help a child find their “voice” (regardless of diagnosis) however that may manifest itself (verbal, nonverbal, gestural, AAC, a.k.a whatever works for the child!). Over the past 11 years, I’ve treated hundreds and hundreds of children with ASD and the lessons I have learned from them are always amazing and much needed! I think as long as we, as professionals, parents, educators, etc. remember it’s not about just teaching children but it also about learning from them, this will always be our guide and allow our relationships to grow with dignity and respect. ASD is really my passion (although I love all speech and language related disorders) and I so very much LOVE living in a world with persons with ASD! (and no I don’t have any persons with ASD in my family, I just think we can easily miss the gifts that are awaiting us in our relationships with persons with ASD if we are always focused on what people can’t do, or need to learn to do!). Anyway, yes, love this post. No one knows everything about ASD, included a person with ASD as it is different for every person. As long as we keep the child/family the center of our focus, I think we can always have a loving relationships that can be beneficial for the development of ALL persons involved. Thanks for this post! Sharing!!!
I have to tell you that your posts on this topic make me very sad. It is unfortunate that you have had such an unpleasant experience. However, I urge you to recognize that your experience is not representative of the experience of every family. It is important to recognize the difference between bad therapy and bad therapists. Based on what you have written in this and other posts related to ABA (for which you have closed commentary), it is clear to me that your family encountered bad therapists (as have many others, I am sure). I can assure you that your experience is not representative of the field as a whole. It is truly tragic that such unethical, misinformed, and untrained therapists have the power to destroy the reputation of an entire science. More importantly, these types of therapists can destroy the lives of children. I agree with what you have written here–all professionals have the obligation to share the most accurate and unbiased information possible. I also support your right to share your personal experience. However, I urge you consider your own advice in your posts. There is a difference between sharing your personal experience and posting inaccurate information (I would directly comment on the inaccurate post if I were able to). In the same way that families turn to professionals, they also turn to other parents like you. You have created this wonderful platform that also allows you to have an impact–please use consider your own advice when sharing information.
Ashley, exactly where have I posted “inaccurate information” unless by that you mean that I have posted an opinion you do not agree with?
Your article touched my heart in so many ways. As a teacher of children with autism for the past 12 years, I have seen many teachers come and go. Believe me, there ARE good teachers out there, some are even wonderful. However, I do agree with you that there are others who do NOT treat some of our non-verbal or more complex learners with the compassion and dignity that they deserve. I have witnessed and been appalled at some things I have seen. I have reported the incidents to my superiors. In one case, the teacher was quietly allowed to resign. The other is still in the process of being addressed. Non-verbal kids DO understand, CAN hear what is being said, including every negative statement made about them. In so many cases I still think there is such a thin line between genius and autism. There are so many incredible kids out there that all deserve an equal opportunity to reach their full potential.
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