Film Review of Documentary “Sounding the Alarm: Battling the Autism Epidemic”

Recently, I decided to watch the new Autism Speaks documentary “Sounding the Alarm: Battling the Autism Epidemic” and live tweet my reaction/outrage in real time.

Why did I do this?

Well, I had seen clips of the documentary.  I’d heard some feedback that was concerning. I know that many of my friends wanted to watch but were afraid to. I think it is quite telling when a group called Autism Speaks puts out a documentary that Autistic people are afraid to watch.  I wanted to watch it because I wanted to know what was being said about us, without us.  Again.

I mentally prepared myself and the amazing Leah Kelley stepped in to watch and tweet with me so that we could support each other.  Spoiler alert:  We both ended up in tears, but probably not for the reason that the people this film was intended for probably did.

Image description: textured paper graphic on off-white background with flames shooting upward from the bottom. The font is multicolored in black, red and yellow and text reads: “Did you know? If you got your information about Autism from Autism Speaks, you need to forget it all and start over” boycottautismspeaks.com
Image description: textured paper graphic on off-white background with flames shooting upward from the bottom. The font is multicolored in black, red and yellow and text reads: “Did you know? If you got your information about Autism from Autism Speaks, you need to forget it all and start over” boycottautismspeaks.com

Let’s start with the title.   Sounding the Alarm: Battling the Autism Epidemic.  Another attempt at using war metaphors to describe our lives.  Do the people making these films ever think that Autistic people are going to watch?    Or do they just assume that we don’t have feelings?  Autism is my neurology.  You can’t battle who I am.  Not without destroying who I am.  Turns out, that’s exactly what Autism Speaks wants to do.

We start out with text on a black screen with ominous music about the rising rates of Autism.  No mention is made of how we have more educated professionals who are able to more easily recognize people who would otherwise go undiagnosed.  That’s not good fear mongering,  I guess.

The film then shows images and old pictures of Bob and Suzanne Wright’s grandson, Christian.  Cute kid!  Bob Wright talks over the pictures by saying “He was a real little person”.

They talk about recognizing that their grandson was different from other children, and how it felt when he ultimately received  the diagnosis of Autism.  Their reaction was certainly not one of acceptance.  They wanted to fix him.   This is how Autism Speaks was born.

Throughout the film, the “cost” of Autism is brought up several times.  From Bob Wright lamenting that “you don’t die of autism”, to doctors talking about the millions of dollars we cost, to parents distraught about paying out of pocket for therapies that are not covered by insurance.  There is not one point in this film that talks about the fact that not only do many Autistics find ABA (the therapy they bring up the most) to be dehumanizing and abusive, but also that childhood should not be spent in 8 hours a day of therapy.  Autistic children are children first.  They are not your science project.

By far, the most disturbing part of the film for me was the filming of Autistic children and young adults in crisis.   Shown at their most vulnerable and since all of the parents claimed they were unable to communicate, certainly without their permission.

I was able to emotionally separate myself until the moment a young man who was Autistic and had Down’s Syndrome was shown, clearly in distress.  His parents and caretakers sat around a table talking about how this young man was unable to communicate.

He was communicating right in front of them!  They were not listening!  It made me so angry for that young man.

In an earlier scene, a little boy was asked to give his mother a hug.  He complied.  I guess he didn’t comply enough because she asked him several more times when he was already done.  She later said “We want our child to say ‘I love you'”.  Um, he just did.

When will people understand that communication is so, so much more than verbal speech?  It is heartbreaking for these kids to see them trying to communicate and essentially being ignored.  It is also heartbreaking for me, as a parent, to see these parents so focused on verbal speech above all else that they are missing out on beautiful relationships with their child.  These kids deserve more.  You know what?  These parents deserve better too.  Autism Speaks is selling them a LIE about which lives are worthy and which are not.  And they are buying it, but they don’t have to.

I’m still confused a bit about the part of the film that features Dan Spitz of Anthrax.  He calls  parenting his Autistic children “a living Hell” and then blames the fact that he needs to work to provide money for his family on Autism.  There is a scene where he hugs his wife goodbye as he goes on tour with his band which is very sweet, I’m sure, but that is somehow the fault of Autism?   Well, I know plenty of military families who have Autistic children who are separated for long periods of time that don’t blame it on Autism.  Once, my husband went to the Canary Islands to work for eight weeks because he has to work so that our family has money, but he didn’t blame the fact that our child was Autistic for our separation.  Maybe it was my Autism that caused it?  In any case, most people have jobs and have to work to make money and that is not the fault of Autism.

Moving on….

There is a scene at an Autism Walk where they address the legitimate concern that people in marginalized communities have less access to services and appropriate diagnosis.  They spend, like a whole minute on that before they cut back to the Autism Walk and fail to mention how they raise millions of dollars with these walks that they then never put back into our communities.  A really simple solution, I think, is to spend less on “research” and administrative costs and invest that money back into communities that need it most.

There is a lot of talk about “research” and the cause of Autism and the search for a cure.  Honestly, this part just made me too rage filled to revisit.  I don’t need to be cured.  I need acceptance and I need Autism Speaks to stop talking about me like I’m a huge burden who only exists to make other people’s lives harder.  So, that’s all I have to say about that.

……….

Autism Speaks gets a lot of criticism for not listening to Autistic adults.  In this film, they asked several Autistic adults what they liked best about their jobs.   They didn’t ask them what services they would like, or how they would like to be supported, or if they’d like to have a voice in the conversation about them.  But they did ask no less than four people what they liked best about their jobs!

This is a point that really upset me as well.  There are huge lacks of adult services that offer meaningful support.  In many places, a thing such as adult services doesn’t even exist.  In places where they do exist, they are extremely underfunded.   In the film, all of this was talked about solely on how the parent experiences these things.

In a film full of dehumanizing rhetoric, calling us a problem, saying we make your lives a living Hell, focusing on how much we cost, we wonder why adult services are so lacking?  When we are not human, what’s the point in supporting us?  I mean, if we can’t fake it by being “indistinguishable” and comply to your demands of always using verbal speech, even when it hurts us, what worth do we have?

I am glad they talked about this issue, and the lack of appropriate transition and adult services.  It’s a thing.  How can we change this?  What can we do so that Autistic adults are supported?  These are valid questions.  I just don’t think that talking about us as if we are half people unless we are cured is doing much other than making it worse for us.  I know the answer is not to ask our parents instead of us.

That is the big problem with Autism Speaks, and with this film.   It’s a film about parents who feel like they were robbed of the child they wanted.  It’s a film about pity, fear and anger and the terrifying consequences of ableism on Autistic lives.  It is not a film about “awareness”.  It is a film about exploitation.

I would not suggest that anyone watch this film.  I know many parents have felt that they can watch these documentaries and feel “not alone”.  I just don’t see how you can justify your need for support at the expense of the dignity and humanity of Autistic people.   There are ways to find respectful support that don’t demonize and stigmatize our lives.   Use those 57 minutes of your life that you’d spend watching this to do something to make the lives of Autistic people better.  Because this film certainly isn’t helping.


Lei Wiley MydskeAbout the Author, Lei Wiley-Mydske

 

33 thoughts on “Film Review of Documentary “Sounding the Alarm: Battling the Autism Epidemic””

  1. Christopher Eckman

    I find it ironic that we autistics have been viewed as the ones who can’t notice body language, yet there have been NTs who have been clueless when other people have used non-verbal methods of communication. Everyone needs to understand that all people can communicate, even if it is not verbally.

    Also, I’ve found it very annoying that Autism Speaks has very often talked about how important it is for the community and families to receive services, yet this organization spends very little of the donations it receives on these services. Most of the money is spent on advertising and “research”. If they truly care about the community and families receiving the services they need, then the majority of the donations would be spent on those services.

    I hate that while autistic people (and people with other disables as well) can sometimes have difficulty finding jobs, the Wrights are using our existence to make themselves rich. Stop exploiting us, Autism Speaks!

    1. Dear Christopher,
      you write “I find it ironic that we autistics have been viewed as the ones who can’t notice body language, yet there have been NTs who have been clueless when other people have used non-verbal methods of communication.” What I find even more ironic is that Aspergers like you have such big difficulties in getting that these people that appear so autistic might NOT be NT.
      I know that it is hard to take in, but please face the unpleasant fact that the biggest challenge and risk for autistic and non-autistic people are not NTs, but high-functioning aspies.
      Eva

      1. David J McDonagh

        How dare you accuse other autistics of being “the biggest challenge and risk for autistics and non-autistics. The best support I have received for my autistic son is from autistic adults who have some idea of what he is experiencing. The real risk to my son is from bigots who regard him as “lost” or part of an “epidemic”. It’s not surprising that Bob Wright can endorse Donald Trump on Twitter: maybe Trump will build a wall to keep out those “high-functioning aspies” you hate so much.

  2. I had to stop watching after Anthrax guy. Now I want to boycott Anthrax. When the morning starts with a meltdown….hmmmmm. Was daddy possibly practicing loudly, preparing for tour the night before, keeping the kids awake? Maybe kids upset Daddy is leaving for a long time?

    1. I think they just needed someone slightly famous in it to show it affects everyone… I didn’t even realise they were still a band…

      Totally agree though, did they earn the kids in the weeks leading up to the tour etc etc…

    2. I feel bad for these parents who aren’t provided with proper support systems. Yes being Autistic, or having a child with Autism, can provide for more challenges, however it also provides for more victories and celebrations. I was not a fan of that line (“When the morning starts with a meltdown”) either. Just because you have a difficult start to the day, doesn’t necessarily mean that the whole day is a bust. You have to work through it and redirect the negative focus to something more positive. I am not a supporter of Autism Speaks. Yes, they have done a lot to raise awareness, however, as proven in this documentary, it’s not always the correct type of awareness, and their major goals are more detrimental to the Autism community than beneficial. It’s upsetting to see so many people support this organization thinking they’re helping people, when there are so many other organizations that are much more deserving of the publicity and notoriety.

  3. Very thoughtful and respectful review. Your honesty is refreshing. Parents of Autistics that support Autism Speaks want to ignore much of what you have said here Lei. Thank you for shedding a bright light on a dark topic!

  4. Thank you for this. I watched a whole 5 minutes before I turned it off. I couldn’t do it. The VP of Autism Speaks called Autism a medical disaster and that made me furious. My son is not a disaster. Ugh. I won’t even attempt to watch the rest.

  5. Thank you Lei Wiley-Mdsky for responding to this documentary. You have helped me understand the anger expressed towards Autism Speaks on Social Media. I do not have Autism but am a teacher who is now working in disability care and I am working on changing the prejudice I have grown up with to accept people with Autism, especially non-verbal, as equals if not superior.

    I am upset to read that there is a lack of interest in understanding the depth of non-verbal communication and an emphasis on researching a ‘cure’. I always speak directly to the person I am working with which is sometimes seen as strange by parents and carers. What I lack is ability to understand properly…but I guess that takes time with each individual.

    I will not be watching the documentary and am sad that it will upset others
    Again, thank you
    Lyn

    1. I wish you were my sons Teacher. His Teacher, in Jr. High thought that when he reached out to grab at people to communicate that it was simply inappropriate behavior so she isolated him in a small room by himself. And by the end of the school year he was grabbing people by the hair and she was calling me to come get him. Our school district does not teach academics to children living with autism. After the sixeth grade. They call the following life skills class which is basically babysitting with an occasional trip to McDonalds and the local library. I found out from one of the Teacher’s Aids that my Son was being placed in a small closet size room due to his attempt to communicate, which they called inappropriate behavior. I always wondered why his Teacher avoided talking with me. I thought it was strange that his Teacher wouldn’t ever tell me anything about what my child’s was doing during the time he spent in her class room. He starts his first year at our local High School. And I plan to go with him to assist in anyway I can. As time is not on my childs side and he deserves, just as much chance to learn as children who are not living with Autism. I hope you will consider any oppertunitie to speak to other Teachers at your local Schools. God Bless all the details of your life.

  6. Great review. I watched this the other night to see how bad it was. I’m in the UK so luckily have no experience of Autism Speaks.

    I agree with every point you make. And I was shouting at my TV telling the parents that their kids were communicating and to stop grabbing their hands to stop them stimming. It took me 2 hours to watch it because I kept having to pause it to compose myself…

  7. This is a very interesting article. My sons and husband are ‘on the spectrum ( and recently there is indication I may be also)-They certainly score high with traits and it is something we as a family have been learning about.. They would be classed as in the ‘aspergers’ type tho I gather the category no longer exists.

    I have read a few things lately on the approach taken by the author here.

    I find it very interesting how viewing autism through a different paradigm leads to a very different outlook.

    While I have been looking at all this I have been looking at another issue and am suprised at the links. I see in both areas.
    I am lefthanded and so is my sister as was my grandmother.

    I was told about the horrible time my grandma had as a child – being caned on her left hand repeatedly to force her to use her right – so badly affected by this cruelty was she that she developed a very bad stammer.

    Her auntie who brought her up after her mum died – eventually went to the school and told them it must stop – it did and her stammer went – tho her handwriting was always terrible even with her left.

    I thought this attitude of left handedness being an abnormality rather than diversity and society resorting to all sorts of cruelty to change the child to right handed was long gone before my grandma passed away.

    I am 53 and am now using technology and the world of the internet has opened up to me such things as a online store for lefthanded products. I won’t go into my joy at finally being able to do things with ease and without pain and frustration just because of having lefthanded items – such a difference. But I discovered through chatting on the forums of the site and reading their articles that not only is there a horrible history when it comes to how lefties were treated in the past of,which I was already aware) I am shocked to find it is still happening in some cultures as the norm, then also in individual homes and even British schools who may not cane and force handwriting but are using social pressure to force righthanded eating resulting in stammers.

    There is still much discrimination In a right hand world. As a group we do not shout loudly – we mostly adapt – but we shouldn’t need to. And a leftie should be helped to reach full potential as much as a rightie by being catered for equally. Manufacturers just do not cater for us. Designers rarely consider us, and even lefthanders them selves do not realise how much of a disadvantage they are often at. A forgotten minority. Blatant cruelty I happens less but insidious social pressure and downright neglect of needs is rife. The effects may only be subtle but they are still resulting in stammers and the like and restricting choices that affect lefties future and much more. ( I think I need to write a book!)

    Now please don’t think I am trying to say the situation is anywhere as bad as how neuro diversity is being treated ( tho really the variety of natural handedness also is a mini spectrum of a neuro diversity when looked at closely) – but it has brought home to me how society views diversity and feels all must be normalised rather than catering for the untypical as much as for the typical.

    Old attitudes to left handedness were terrible and many children suffered physically and emotionally and were affected for life in so many ways – now it’s less brutal but conformity is still preferred even if it’s just by it being the right Handers being catered for and lefties must adapt.

    This attitude really is emphasised tho when we start to look at autism – it highlights deep seated attitudes you don’t even realise are there – and so many children are suffering due to seemingly well meaning attempts to normalise or force to fit in with a world set up for neuro typicals – and it is no more well meaning than intimidating a child into eating right handed so they will fit in better in social situations!

    The author of this article highlights this issue very well – and it is an area many outside the circle of those affected by autism are not aware of -in a world allegedly moving away from discrimination many would be very shocked at what happens to lefthanders so they would be horrified if they knew the truth about how autism is being treated and it’s implications – but they are oblivious!

    It will be a challenge to change views even among people who are very involved with autism – so goodness knows how the message will ever reach the rest.

    If even a basic neuro diversity such as our handedness is still discriminated against and viewed negatively and not provided for routinely in our world what chance has autism got??

    1. What chance? The chance that people like you, who see the mistreatment, the abuse, and the discrimination will not just sit idly by. but stand up and say something.

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  9. Sharon daVanport

    I’d never be able to sit through this film! Thank you so much for doing it, Lei, and for writing an informative, as well as heartfelt review.

    1. It was hard to do, but I am glad I did it. More people need to know how Autistic people feel about the way Autism Speaks talks about us. Just because they are ignoring us, doesn’t mean the rest of the world has to.

      1. Lei,
        There are no reviews yet on Amazon Video on Demand for this film. Why don’t you write one (or cut and paste part of the review you wrote here). I think it would be very impactful for a lot of people and I agree…what you say is informative and heartfelt. You go girl!

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  11. Leigh Anne Dearing

    Is it so wrong for those of us who have children with Autism to wish for a normal life for them? Is it wrong for us to worry what will happen to our children after we are gone? Should my daughter have to go and live in an underfunded, understaffed group home because I won’t be here to take care of her? Is it wrong to advocate to have better services and education for children with Autism? Is it wrong to not want a child to have to go through all the struggles that come along with Autism? Is it wrong to ask States and insurance companies to provide medical interventions to improve the lives of children with Autism so that my daughter’s anxiety doesn’t lead her to stick her head through windows, bite, and hit herself? I watched this movie, and I wept through most of it because I could empathize with the parents of the children in this movie. Parents and grandparents that advocate for children with Autism do it because they LOVE their children, and they want to make life better for them. Lei, I respect you greatly, but my daughter is not able to express herself like you can. She can’t write, she can’t type, she can’t converse with me to let me know what she’s feeling. I love her- period. But it is your JOB as a parent to try and provide the best life that you can for your child. I don’t do any less a job trying to make life better for my neuro-typical daughter, either. Despite what you may think about those of us who advocate for Autism awareness, acceptance, treatment and research are trying to do that the best way we know how.

    1. Sharon daVanport

      Leigh Anne:

      I’m not quite sure how you concluded that the non-stop dehumanizing rhetoric from Autism Speaks, and the review of their latest film project means that Autistic Activists don’t support advocacy for better supports? Some of our greatest Allies in the work we do are parents of Autistic children (including boycotting Autism Speaks) .In fact, the author of this article is a parent to an Autistic son, as well as a tireless advocate for more effective resources and community supports for herself, her son, and the greater Autistic and disability community.

    2. But, what is “normal”? Being forced to be something they’re not just so the parent’s don’t have to be so upset about poor little Johnny or poor little Mary? Would you electrocute a child born with no legs just to try and make them “normal”, to fit into your perfect little ideals?

      There is a big difference between wanting to help a child to survive and manage in the real world and with trying to force physical, emotional and mental changes onto a child so they can survive and manage in your ideological perfect world.

      The only thing that I agree with in the documentary is that it’s shame US medical insurance often doesn’t cover support for those with ASC’s. However, I fervently disagree with ABA as a therapy/treatment for autism – so perhaps it’s a good thing that insurance doesn’t cover it?

      MaFt

    3. Leigh Ann, I am the author of this piece. How old is your daughter? I am a 38 year old woman with many, many years of experience trying to find my voice. I am assuming your daughter is a child, since that is how you described her. It is ridiculous to compare the communication skills of someone my age to a child’s. I can type and I can talk on most days, but I am also non speaking at times. I have not always been able to communicate as well as I do now and I still struggle daily with communicating effectively. What you are reading are my words, but if we were talking face to face, I guarantee you that I would not be quite so eloquent because verbal speech is not something that comes easily to me.

      In addition to that, I am also a parent of an Autistic child. My child has needs that are much greater than mine and I do not know what the future holds for him. I do know that he is bright, happy, beautiful and above all else, accepted for exactly who he is. We do not use the rhetoric of fear or pity when we talk about him or to him. I do agree with you that it is my job as a parent to provide my Autistic child with the best life possible. I choose to do that by changing the world, not my child. I will always choose to fight ableism, and not the perfect Autistic child I have been blessed to call my own. I choose to fight those who would say that he is less than, that he is a burden, that he is a tragedy. Because he is NONE of those things. I owe it to my child to do my best to change the conversation about Autism to one of respect, unconditional acceptance, and authentic inclusion.

      That is the least that all of our children deserve. That is the least that I deserve, and that all Autistic people deserve. We are not here doing Autism to you. We are Autistic and it’s not our fault if those around us are unwilling to examine their own deeply held prejudices towards Disability. I highly recommend you read through this site for the words of other Autistic women, many of us who grew up without the presumption of competence. Who grew up being viewed as The Problem that needed fixing. It is a terrible place to be. We have the opportunity now to do better by our Autistic children.

      Your daughter deserves respectful supports, not “treatments”. Your daughter deserves to be celebrated for exactly who she is. I have no doubt that many parents who follow the old Disability narrative of fear and pity do love their children. That doesn’t mean they are doing right by them. It just means they have not been exposed to the ideas of acceptance, neurodiversity and Disability with a capital “D”. Now that you are exposed to them, learn from Autistic adults so that you can do better than our parents did with us.

      1. Lei, I have a 14 year old daughter recently diagnosed. When she was little I thought she was just quirky, which is okay,because we are all quirky in some way. One thing i’ve worked on with my daughter even before I knew about the autism was to stress that we all have to live and function in a world that may not be exactly as we want. Yes, we can advocate for change, but often we can’t control the larger world around us. All of us, on the spectrum or not, all have to find a way to come to terms with the larger world as it is. We have to communicate with others, work them, live them and somehow find a way in the middle. Yes,it okay that her closet may be organized by the colors of the rainbow, but it’s also okay that other’s closets aren’t and she has to manage the anxiety around being unable to change that.
        I agree that there is has been limited focus on the positive abilities and too much on the deficits of those with autism. Until change happens, those with autism have to be taught to communicate and be able to live and compromise in the world as it is now.

        1. The job of every human on this planet is to live in a world cooperatively with others. I do not disagree with that. My disagreement comes when you ask me to change who I fundamentally am in order to fit in. I can’t do that. I won’t do that.

          I have never thought or said that we did not all have to learn to live together. In fact, I am a huge advocate of meaningful and respectful supports for both individuals AND families. I’m confused as to why people think that because I don’t believe in teaching compliance and forcing “normalcy” that somehow means i don’t want Autistic people to ever get help at all.

          Autistic people must find ways to manage their disabilities and find accommodations and supports. Others have to meet us halfway too, with the understanding that our forms of communication are valid, our sensory experiences are valid and who we are as humans on this planet is just as valid, It really should not be that difficult for others to accept that.

  12. Great review. I can honestly say I will never support any movie that does this. It is a step in the same direction as Suzanne Wright’s “Call to Action.” Autism Speaks makes hate speeches, and what they say would never be acceptable to say about us if we were not autistic. I am not someone who makes the life of every person a living hell, or a burden, financial disaster, nor do I refuse to give my mother hugs or tell her I love her in a way we can both understand if she listens.

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  16. Thanks so much for posting this, Lei! I watched literally 1 minute of this documentary before I knew this doc was not for me– I absolutely do not agree with the viewpoints espoused in this documentary. I really appreciate that you wrote this. You are able to explain why it made me so mad much better than I can! Autism does not need to be cured, end of story.

  17. I agree with every criticism levied by Lei against this film. However, I am an autistic person who works as an ABA therapist and I can assure you that modern ABA therapies are NOT inhumane. In fact, they are more respectful of the child’s wishes and communication preferences than other types of treatments. Essentially, the idea behind ABA is that children are directly reinforced with whatever they find reinforcing (read: anything they want, within reason) for appropriately participating in a curriculum that teaches them communication skills, emotional regulation skills, imitation skills, etc. Additionally, ABA also usually has a family component, which forces parents to consider the idea that their child has preferences which should be respected in exchange for compliant behavior.

    I see no difference between ABA for children with autism and what we deem acceptable for children without a spectrum disorder. Children in the United States are rewarded for “good behavior” which means clear communication and self control (at least at the age which ABA interventions usually take place). Why should we have different expectations for children with A.S.D?

    Also, the research doesn’t lie; ABA is more effective at helping children reduce undesirable behaviors that are preventing them from participating in mainstream activities. And no, I don’t mean stimming or issues the neurodiversity community would deem cosmetic. I mean the self injurious, violent, unacceptable and harmful behaviors that cause children and families so much stress and pain.

    1. It would be great to hear more about your perspective as an autistic ABA therapist! As an NT (as much as such a thing exists!) parent of an autistic son, I find your points reasonable. At the same time, while we have had some “ABA therapy”, which seems to be of the type you describe, it hasn’t seemed to me to be “real ABA” – which I don’t think I’d stand for. In fact, I’ve had to intervene in the therapy on many occasions to stop things that seemed disrespectful, or where the therapist was not understanding well what was going on. And that is the issue here – the certification does not seem particularly hard to get, almost all the therapists are students with little experience of life, and sometimes no real experience with children at all. On the plus side, many have proven malleable to our ideas of how things should go, and many have been insightful and and able to relate respectfully. On the m minus side, some have been oblivious to a lot of what was going on, unable to distinguish between just being a child and being autistic, etc. None of them I spoke to on the matter had ever read any of the narratives written by autistic authors. It has been said that the particular therapy does not matter so much, but that the particular therapist really does. And all of the good ones seem to do more or less the same things regardless of their “brand” of therapy, while the worse ones are more rigid in following prescribed routines. For me, the situation is that the only coverage we could get via insurance was for ABA, and the main benefit of the therapy was not the therapy itself, but the ability of my son to stay in his proper grade level and be suitably challenged – before the therapy started in school, he was being held back because of a very few issues of maintaining focus and sitting in a group. With the younger kids he started getting frustrated and bored, and exhibiting more “maladaptive behavior.” With the support of the therapists, we were able to move him up a level, and being involved in the more interesting academics and crafts pretty much instantly resolved the behaviors that were disruptive to the lower-level class.. The therapy was almost exclusively in the preschool, and because of that alone severely limited how “ABA” the therapists could get… and, in addition to us as parents keeping on top of things, we had the constant oversight and input of excellent teachers who had extensive experience with CHILDREN. At this point, we and the teachers have reached the conclusion that there’s no need for (and even detrimental effects of) therapists during the morning (structured) hours of preschool; the ABA team insists we don’t understand the situation and especially the future implications, and that it’s still important to have therapists. We’ve discussed this extensively with our son, and he stated preference (fairly consistent, but not unequivocal) for not having therapists in the mornings, and he’s consciously maintained good classroom behavior towards this goal. So, at this point he’s been in school without therapists for a few weeks, and everyone is happy except the ABA folks. In the less-structured afternoons, he still has therapists on some days. In the fall (next month!), he’ll be in kindergarten at a different school, and we are faced with the decision about whether to fight for allowing “our” ABA therapists in the school at all, or seeing how the school-provided supports (pretty minimal at this point) work out. My son has requested no therapists at school, but does want the home visits (once a week for 3-4 hours) to continue. I’m not sure that would even fly with the ABA folks, but it does seem like it would be comforting to us (parents and child) to have that little bit of continuity. Of course, we are imagining the particular therapist we’re used to for these home visits! If it were a different one… likely not.

      Anyway, as I said, it would be great to have your perspective as an autistic ABA therapist. If our 5-year-old son is happy and thriving in school, and the teachers don’t find his behavior to be any less manageable in the classroom than the other kids, what risks might you see in not continuing with therapists in the school setting (or at all)? On the social side, if he is something of a “loner”, but no more so than many undiagnosed children, and with the skills and motivation to play with other children when he wants to, what do you think might be risks as the social situation changes in elementary, middle school, and high school, if we don’t “instill the necessary skills through ABA” right now?

      I hope to hear from you! And from any autistic parents/adults/kids that would like to share their perspectives and experience.

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