News The latest developments in autism research.
Profiles Portraits of scientists who are making a mark on autism research.
Toolbox Emerging tools and techniques that may advance autism research.
Spotted A roundup of autism papers and media mentions you may have missed.
Opinion Conversations on the science of autism research.
Viewpoint Expert opinions on trends and controversies in autism research.
Columnists Dispatches from experts on various facets of autism.
Crosstalk Debates and conversations about timely topics in autism.
Reviews Exploring the intersection of autism and the arts.
Q&A Conversations with experts about noteworthy topics in autism.
Deep Dive In-depth analysis of important topics in autism.
Special Reports Curated collections of articles on special topics in autism.
Webinars Presentations by leading experts on their latest research.
Julia Yellow
Opinion / Viewpoint

Before talking about autism, listen to families

by  /  26 January 2016
The Expert:
Expert

Shannon Des Roches Rosa

Senior editor, Thinking Person’s Guide to Autism

I take a deep breath before reading any article, popular or scientific, about autism. I steel myself because most of these stories paint people like my curly-haired, autistic teenage son as burdens to their families — as changelings or enigmas. I love my son Leo fiercely and consider him none of those things, so these stories hurt. My adult autistic friends are even more pained than I am by these puzzlingly negative portrayals.

Part of the problem is that in the mainstream media, researchers do not have much opportunity to directly describe their own research. Even when a journalist interviews a researcher, the core scientific message may get lost or misrepresented if the two parties do not accurately grasp each other’s goals.

Still, in many cases, autism researchers do have control over their message to the public.

Most have the best of intentions, but their goals don’t always translate into the types of benefits that autistic people and their families need most.

I’d like more researchers to take their influence on public perception seriously. So I have some advice for scientists about how to get the word out, whether they are reporting their findings in a journal or talking to the media. I’d also like to see them bring autistic people into the conversation early in the scientific process.

Words to the wise:

In writing for scientific journals, autism researchers can minimize negative connotation through word choice. Simply swapping ‘differences’ for ‘deficits,’ for instance, can skew perceptions of autistic traits and development more positively, and prompt readers to try to understand autistic people rather than to change them into non-autistic people.

Learning to recognize the features of autism instead of focusing on ‘deficits’ is crucial. No child deserves to be viewed as a collection of symptoms, yet that is the inevitable outcome of a deficit-based approach. ‘In need of repair’ was how autism experts initially conditioned me to view my son — an outlook I now regret. Leo is no less lovely for being immune to normalization.

Terms such as ‘high-’ or ‘low-functioning’ and ‘mental age’ may be convenient clinically, but they interfere with accurate perceptions of abilities and disabilities. To quote Laura Tisoncik in Autism Mind, “High-functioning means your deficits are ignored, and low-functioning means your assets are ignored.” I would prefer that scientists choose terms that focus on meeting the needs of autistic people instead, such as ‘low- and high-support,’ instead of those more judgmental words.

Blurring the lines:

For researchers speaking or writing about treatments in scientific venues, it is important to pinpoint the problem you are trying to solve. Do not say you are treating autism if your treatment applies to another condition that is merely related to autism. It’s true that autistic people have higher-than-average rates of epilepsy, gastrointestinal issues and anxiety, among other health issues, but those conditions are not intrinsic to autism. It’s not accurate to describe people whose epilepsy or anxiety, say, is under control as ‘less autistic’ when in fact their autism is unchanged. They are instead happier, healthier versions of their autistic selves.

Blurring the lines between autism and accompanying conditions also opens the door to peddlers of unhelpful or even dangerous ‘cures.’ The pseudoscience-based recovery industry preys on parents’ fears, reeling in families by targeting issues such as digestive problems and food allergies and asserting that treating those issues cures autism. In extreme cases, these misleading pitches can be fatal to autistic children.

Please avoid terms such as ‘recovery.’ Mounting evidence supports the idea that autism is prenatally wired. So unless there is some way to completely undo that key wiring, people labeled as ‘recovered’ most likely remain autistic but have simply developed skills for passing as non-autistic. Those who find eye contact uncomfortable may learn to look at the bridges of people’s noses instead of their eyes, as others rarely spot the difference. Autistic people may also rely on predetermined scripts for socializing, giving convincing but laborious impressions of spontaneous conversation. These masking tactics can not only be exhausting, but can result in losing one’s autism label and diagnosis-dependent accommodations. The combined result, as autism researcher Catherine Lord notes, can be a decline in mental, cognitive and physical health.

Instead of emphasizing recovery or cures, scientists should focus on accommodating the needs of autistic people and helping them learn new skills. That’s the kind of research that my son and our family need now.

Working together:

I’m grateful for recent investigations by scientists into sleep disturbances in autism and the under-diagnosis of girls, both of which are sorely needed. But we need more studies aimed at identifying and supporting autistic children of color and from different cultures. We also need to better understand why repetition-based approaches can derail autistic learning, and what that means for drill-based approaches such as applied behavioral analysis. We need systematic screenings for visual or auditory sensitivities that can impede classroom functioning. We also need a revolution in support strategies for autistic people with alternative communication needs.

I’d like to see more researchers consult and partner with autistic people to direct research according to the real-world needs of those who may benefit from it. Many autistic adults are raring to talk to researchers, not only because of their own interests, but also because they want to guide the conversation so that today’s children do not live through traumatizing attempts at normalization.

Guidance from autistic people about therapies is not hard to find, as they often opine publicly at conferences and in print. They may talk about the perils of normalization therapies, why food aversions need to be understood before they can be addressed, how their visual or auditory processing can change over time and why eye contact should not be a major focus, so to speak, of therapy. Researchers could transform the lives of many autistic people by exploring, verifying and spreading the word about these perspectives.

If more researchers keep autistic people and their families in mind as they describe and direct their studies, everyone involved would benefit. I look forward to the day I can approach the autism research literature with excitement instead of trepidation.

Shannon Des Roches Rosa is senior editor at Thinking Person’s Guide to Autism.


  • good post

  • Sofia Jurgensen

    Interesting point of view, and well worth noting. As a researcher, I must confess I had never thought about it, or heard any colleagues concerned about it either. There is only one caveat to your point. Researchers sometimes need to make use of such strong terms in order to “sell” the problem they are working on, and get funding to do the research. It would be very difficult to make a case for using public funds to pay for research if words like “burden”, “cost”, “impairment”, “disabilities”, etc., were not used. In other words, how do you convince someone that your research problem is important and matters to society if “there is nothing wrong” with the affected subjects? The same goes for journal articles, in order to publish a study report, it is important to make a good “why-do-we-care” point. It would be very hard to do this without highlighting any negative aspects of the condition. Just a thought. 🙂

    • Katie Wright

      exactly…..and the truth is that many ASD people are, sadly, tremendously disabled. I don’t love my son any less than Ms. Rosa when I say my son is severely disabled. Unfortunately, his version of autism is fairly negative and all encompassing. At age 2 autism took all 500 words of his vocabulary and he has never spontaneously spoken since. His GI disease is part of his version of autism so is his compromised immune system. When my son eats some starches diarrhea follows for days. There is an “autoimmune” subtype. C.MacDougle did a wonderful study on kids like mine. Our family spends too much time in hospitals. My son almost died because of his epilepsy and our lives revolve around the need for one of us to literally stand next to him at all times.

      That said, of course my son is so hugely loved and a joy. But parents like myself take no offense at the adjective “disabled.” We need the NIH and the govt in general to invest more funds in research and services.

      • Katie: Of course autism is a disability. That is why so many autistic self-advocates fight for and are informed by cross-disability issues — they recognize the commonalities that those who aren’t themselves disabled often fail to perceive.

        And of course autism affects everyone differently, and some people — like your son, like mine — do require 1:1 or high support. I don’t think we need to call our kids “severe” to get that point across; I think we can communicate our love for them better if we use the terms I suggest, frankly.

        I am surprised that you write autism “took” your child’s words. Yes, some autistic children regress. But we’re seeing more evidence that many of those kids are able to behave socially/typically until their developing sensory systems become overloaded. That overload and how not to worsen it is where we should be looking. We also need to prioritize communication methods over speech, because everyone can communicate (however that looks for them, whether they have ID or not) even if everyone can’t talk. Alternative communication is a desperately under-recognized, under-funded, under-served, and under-researched area. How many Carly Fleischmanns and Ido Kedars never have their abilities perceived or supported?

        I am sorry that your son has such a complicated medical profile, I wish you had more answers, and I hope you have enough respite (for everyone’s sake, your son included). Autistic kids do have a tendency to be more medically fragile, statistically — it’s one of the reasons it’s so important that they and the people around them are vaccinated, actually.

        • Katie

          I appreciate that Shannon. He is so fragile. 2 nights ago I spent over an hour blocking self injurious blows. He suffers too much even with best medical care/ I scoured the entire country. But his regression was indeed swift, as his pediatrician said, catastrophic. Videos show a talkative, typical toddler than a catatonic toddler who stopped recognizing his family. Kids like him need and deserve more help that hopefully medically research will provide.

          • Ethyl

            Does your son have any other medical diagnosis? I hesitate to say autism is a medical diagnosis, because the parameters are behavioral, not biological.I do know he has epilepsy, but has anything else been determined?

          • Kids like yours and mine do deserve much better, and I hope that answers are forthcoming. My own son had a near-death medical experience for which we still have zero answers, despite massive multi-area testing at one of the finest medical facilities in the world. I’ve never had a good night’s sleep since, due to worry.

            I do think (and I’m speaking to all readers here) that regardless of how complex an autistic person’s medical needs are — or the lack of answers as to why those who regress do regress — once a person has been identified as autistic, it’s important to treat them as an autistic person first and foremost, meaning understanding how being autistic affects and the experience of being ill.

            An autistic person who has sensory sensitivities and barriers to communication is probably going to have a much harder time tolerating many physical symptoms of illness and/or being in a hospital environment than a non-autistic person, and their resulting spiraling anxiety may make matters worse, in terms of physical symptoms and SIBs. We need more research into helping autistic people (and those who care for autistic people) manage the experience of being chronically ill, and input from autistic people themselves is crucial. This is one reason I’m a fan of the AASPIRE autism and health toolkits for autistic people, their families, and for health care providers: http://aaspire.org/

            I recently moderated a panel on autism, aggression, and self-injurious behaviors — with medical professionals, and autistic people too. I’ve not finished writing up the medical and self-advocate speakers’ comments due to needing to attend to family matters, but the overview is here, and the rest should be out soon: http://www.thinkingautismguide.com/2016/01/when-autistic-kids-and-teens-are.html

            Again, good luck, to you, and to your son.

          • Katie Wright

            Ah I look forward to reading it. Nothing is worse than seeing you child strike himself, other than when he strikes someone else. I am fairly sure he is experiencing GI pain when this happens. He has severe IBD. We have come a long way but it was too difficult to find competent medical help. That is why the endless eye gazing, learn the signs, pupil gazing research frustrates parents. Instead I wish even a small % of that money could be directed towards helping my son and kids like him not die of a seizure.

          • Ethyl

            Much of the study I did 30 years ago to get a degree in Special Education regarded the multitude of medical/genetic/environmental causes that landed our students in our classrooms. Recently, I took a genetics class, which is basically studying the building blocks of our lives…and was reminded that what is amazing is not that some people show manifestations of chronic conditions, but that any of us even survive to birth at all. The parents of the medically fragile kids I taught in a classroom of kids with severe disabilities put their children’s lives into our hands each day. Specific protocols had to be followed by people not trained as nurses. I feel for you, I have had that responsibility.

          • Katie, I am so sorry for the late reply.

            I found this that might help: http://wearelikeyourchild.blogspot.co.uk/2014/05/a-checklist-for-identifying-sources-of.html

      • Joyce

        Thank you for this Katie. My child is almost identical in terms of medical issues as well. Severe epilepsy, GI issues, Mitochondrial disorder and so on. It seems like this part of the disability gets swept under the rug by so many.

        • That’s because epilepsy is not part of the disability nor is GI nor is mitochondrial – they are OTHER DISABILITIES that exist co-morbid in the same person.

          Obviously, it’s not the exact same thing but:

          I am on the Specturm
          I am also dyspraxic.

          Does the fact that Spectrum stuff tend to sweep dyspraxic stuff under the rug or vice versa mean that dyspraxia or autism is a part of the disability that the other disability community is sweeping under the rug?

          NO.

          Because ASD is not a part of dyspraxia and dyspraxia is not part of ASD – they are different disabilities even if they exist within the same person.

    • Rachel McNamara

      Rights-based approach. Inclusion focus. Our ability to contribute more effectively to society depends on our differences being supported rather than stigmatised. Autistic activists are comfortable with the word ‘disability’ but usually refer to it with the Social Model of Disability in mind. I could link some articles if you are interested.

    • Sofia: It’s a disservice to people with disabilities (PWD) to view disabilities as “wrong” instead of different. That doesn’t mean PWD aren’t in need support and accommodation — exactly the opposite, and sometimes significantly so. But disability has always been part of the human experience.

      What I’d advise doing is putting the negative focus where it belongs: on the barriers to autistic people and their families, rather than on autistic people themselves. It is unfair that our society does not provide sufficient supports to PWD, and burdens them and their families with so many costs. It is unfair that people with communication-based disabilities so often don’t have the supports or understanding they need to function at their unique optimal level, and instead are treated as broken or impaired.

      Disability shouldn’t be a dirty word. People who need help should get it, and their needs should be treated with urgency — because it’s the right thing to do, and not because they or their families are seen as pitiful charity cases.

    • Ramon Fonseca

      But what is it you would be trying to sell? A cure that we don’t want, or help with conditions that we have? why is the research always about curing autism instead of helping those that are autistic?

      • AutismDadd

        Helping doesn’t mean cure. But if by some method you could bring about an end to self injurious behaviors and bring these people into a more normal state, then it shouldn’t be criticized or prevented.

        • Ramon Fonseca

          So if you were being tortured to death, and there were ways to get out of the situation, but the powers that be decide to just kill you off and re-create you as a different person, you’d be okay with that? It would bring you to a normal state.

          • Ramon Fonseca

            Also, ever heard of Ice-pick Lobotomies? These were used on Gay people to help “cure” them. Doctors would take a pick and literally scrape the patient’s frontal lobe. It cured the Gayness alright, but those treated were lucky to get out alive. You get the picture?

          • AutismDadd

            That’s a ridiculous response.

          • Ramon Fonseca

            What is so ridiculous about it smart guy? The only reason you see it to be ridiculous is because you want to cling on to and have some form of justification for your bad behavior and inappropriate treatment of your child. You’re only thinking about yourself when you say you want autism to be cured. Why don’t you ask your child what he thinks about all of things he’s experiencing to just vanish. Ask how he’d feel if he couldn’t be himself. I’m sure he already can’t.

          • AutismDadd

            At least I am a smart guy. Your imagination and fear are getting the best of you. Another conspiracy meant to help those with autism….oh the humanity!!!

  • Rachel McNamara

    I really appreciate this article. An autism organisation has approached me recently, putting me forward as one of several autistic people (one of us is to be chosen as the representative) to be on one of their research committees. They have never done this before and neither have I. So I need to look for ideas from other autistic people and allies about how I can shift the focus to more useful and inclusive research. I may know what sounds like a bad idea and how to explain why, but I need good ideas.

    • kfunk937

      This is wonderful news. Many advocates have hoped to shift some of the focus in research away from “cures” and spurious links to vaccination, for instance, and toward identifying and improving services for autistics people and their families. Matt Carey, a father of an autistic child and tireless advocate, writes about some common issues at his blog leftbrainrightbrain.co.uk . Lollardfish also had a roundtable I found to be fascinating, and promising: http://disabilityintersections.com/2015/09/roundtable-project-semicolon-promotes-mental-illness-eugenics/?subscribe=success#blog_subscription-2 If you haven’t discovered these yet, maybe it’s a place to start.Very best wishes for your future endeavors.

      • Rachel McNamara

        Thanks so much for the links and the kind wishes.
        I was pleased and surprised that the organisation has decided to focus on including more autistic voices from within. It is very rewarding seeing progressive change starting to happen.

        • kfunk937

          It’s long overdue. I hope you find a way to keep us all updated on how things develop. I’ll be keeping an ear out (and following you on disqus to keep from missing anything). Cheers,

          • Rachel McNamara

            I don’t actually know how to use disqus. I just logged in using my twitter account but I will let you know by commenting here if I get chosen Etc. the organisation is AMAZE (Victoria, Australia) and they have just introduced a social impact strategic plan that mostly refers to being more pro autistic voices. They realise it will not be easy to change public opinion but are willing to take it on.

          • kfunk937

            Awesome. I’ll keep an eye out, although I’m in the US. The needs are the same, and networking is gold. (I’m on twitter too, btw. Same nym.)

            With disqus, now that I’m one of your followers, if you comment anywhere on a disqus based article, it’ll show up in my feed. It’s kinda nice, because the folks I follow tend to have eclectic but compatible interests, so I’m introduced to more interesting stuff that I might’ve otherwise missed. A downside is that there’s no messaging. Anyway, thanks so much for the reply.
            Cheers,

        • kfunk937

          Oh. And, you’re welcome. 🙂

      • Rachel

        As promised, I said I would let you know how things went. Today AMAZE announced appointment of two autistic people to their committees and me to their Board. I’m super hyped and keen as are AMAZE so here’s hoping great success for the partnerships http://www.amaze.org.au/2016/05/walking-our-talk-welcoming-three-new-board-and-committee-members/

        • kfunk937

          Congratulations!! It cannot help but be an improvement to have autistic people involved in their own interests and advocacy. I wish you (and AMAZE) all the best.

          Going to the link now… I love what you are quoted as saying:

          “Now Amaze can really say that they have all stakeholders represented at
          decision-making levels in the organisation – and a diverse board is a
          higher performing board.”

          Talking the walk, indeed.

          Good journeys ahead.

          • Congratulations!

          • Rachel McNamara

            Thank you Shannon

          • Rachel McNamara

            Thank you 😊👍 They really have been wonderfully supportive

        • Matt Carey

          I am very happy to see autistics included in this. Congratulations!

          I had the ability to serve on a U.S. government autism committee. It was very hard to see at first what to do and how. But when I would get decision makers stopping me in the hall during breaks to say, “That was a very good point I hadn’t thought about before” I knew I was doing at least something right.

          Bring your experience and your expectations for what research should do. What is important to you and to the community. Try to be realistic in goals. Asking for something unrealistic and complaining that it doesn’t happen helps no one.

      • AutismDadd

        Ah so Carey is Leftbrain rightbrain and we know who’s side he’s on.

        • Kathy

          The side of autism support and science. He’s a great guy.

    • Sam Crane from The Autistic Self-Advocacy Network (ASAN) is also serving on the IACC, and recently talked about her experience being in the autistic minority on an org that affects autism policy and research:

      http://www.thinkingautismguide.com/2016/01/talking-with-asans-sam-crane-about-her.html

      Ari Ne’eman (also of ASAN) was recently interviewed here at Spectrum about researchers partnering with autistic people:

      https://spectrumnews.org/opinion/questions-for-ari-neeman-partnering-with-participants/

      And AASPIRE is an example of the results of autistic people partnering with researchers to effect research and practices, in this care an autism healthcare toolkit for both parties. http://autismandhealth.org/

      Good luck!

      • Rachel McNamara

        Brilliant thx 😃 They have just asked to talk to me for half an hour about their brand logo and imagery (which they are changing) too. Looks like I need to get knowledgeable about lots of things fast.

      • Rachel

        Thanks for all your advice Shannon, it turns out AMAZE has appointed three of us to committee positions. Actually, they appointed me to the Board. They are very supportive and keen (everyone on the Board is all the way through to staff) so I’m looking forward to making a difference on behalf of us. Wish me luck http://www.amaze.org.au/2016/05/walking-our-talk-welcoming-three-new-board-and-committee-members/
        Rachel

    • Ramon Fonseca

      Watch videos on youtube by Hannah Riedel, Ask an Autistic, and not Autism Speaks. Do not listen to autism speaks, I deplore you! What needs to be focused on, coming from an autistic person is helping the person with medical issues, helping us cope with our loud, full of energy surroundings, and helping us better understand the world. Not curing autism; we don’t wish to be cured. We wish to be heard and we wish to be understood. We wish to become the norm. Just like saying that I am homosexual, we wish for it to become a normal accepted thing. That is the only way you can help us. I am going to request that you be added to a group on facebook called the Autistic Allistic Alliance. Just look at what we talk about. You will be able to ask questions on there that autistic individuals will answer. Please visit the group, that is how you can change reality for us.

      • Rachel McNamara

        Hi Ramon, It’s Ok I follow quote a few Autistic people on Twitter and WordPress. I don’t use Facebook anymore because I cannot handle the ignorance on there. I will find out on Wednesday (after the board meets and approves decisions) what position I will have (there will be at least another 4 Autistic people joining as committee or board members- I look forward to meeting them). I have been told they do not support a cure they do have an ‘awareness’ component to them and talk about being a “moderate” organisation and “unbiased” (which of course is not possible when you exist in an ableist world) – wish me luck trying to make inroads here.

        • Ramon Fonseca

          Alright then! I totally understand- being in this group has been a… growing experience.

          • Rachel McNamara

            I am also so grateful for the opportunity to learn from / connect with other Autistic people. Huge growing experience for me too. Social media is awesome that way. I’m on Twitter if you are interested in being in contact there or if the group is on there ??? @rachelmcnamar15

        • Matt Carey

          One thing to keep in mind–while many of us autism parents have alienated autistics, we still have very valid places in the discussion. For example:

          1) My kid will not be on committees or boards. When I speak for him, his voice should carry the same weight as any other autistic’s voice.

          2) When I speak about autism in general, or autistics who are not like my son, it’s very much like when you or others speak about autistics who are like my son. When you are on a committee or board, you have to speak for more than just your own experience. The community is too diverse to have a representative from each subset on a committee.

          3) Parents, friends, family are all a part of the community too. All have valuable input and all may need various levels of support. Supporting parents by getting them good information is a good example.

          4) This isn’t to say that you have to support every idea that is given to the community. There are many failed and damaging ideas that are strongly promoted in the autism communities.

      • Rachel McNamara

        I keep forgetting to specifically say that I am Autistic (you knew that didn’t you?). Thx for the advice

        • Ramon Fonseca

          Yes I did.

    • Matt Carey

      One researcher I spoke to has told me a number of times about how effective John Robison has been working on research committees.

      The short version is this–he always asks, “how does this hope to improve the lives of autistics?”

      In many ways the role of the community member isn’t as much about judging the quality of research proposals but the goals of research. A project can be excellent as an academic exercise, and may provide some excellent learning, but not advance the needs of the community.

  • Kozmo Kliegl

    It could likely be productive for researchers to poll and study ADULTS with ASD, comparing those (who are similar to each other with) how they cope could yield more effective treatments for all affected.

    At present, virtually all the studies are focused (and funded for) on children. We now know there are “millions of adults” who are either languishing or being misdiagnosed and given treatments that may exacerbate their woes

  • Lars Forsberg

    Thanks for a really good article. It is so true. Scientific research about autism can be divided into the good, the bad and the ugly. The good researchers are trying hard to do the things you suggest, among which I include Baron-Cohen who has chosen to write ASC (Autism Spectrum Condition) instead of ASD (Autism Spectrum Disorder) in his research and also has discussed why this is so important. The bad researchers may have good research about autism, but do the bad things you mentioned in your article. Then of course, we have the ugly research, of which I want to especially mention a bumetadine study from 2012: http://www.nature.com/tp/journal/v2/n12/full/tp2012124a.html

    In this study, 60 children diagnosed with autism or Asperger, received either placebo or bumetadine daily for three months. Bumetadine is used to reduce extra fluid in the body caused by conditions such as heart failure, liver disease and kidney disease. At day D0 and at day D90, the children were rated with a protocol called Childhood Autism Rating Scale (CARS) by independent evaluators. The evaluators did this by looking at video films of the children. They found that the drug significantly reduced the CARS scoring compared with placebo. This study is published in a peer-reviewed journal with a quite high impact factor. So what is my problem with it?

    First of all, it is doing all the bad things you mention in your article, starting with describing autism in the introduction as “an early-onset pervasive developmental disorder associated with social disability, communication impairments, repetitive behaviours and restricted interests (ICD-10)”. Even “restricted interests” is mentioned in the context of a disability, as something being bad. This is unfortunately in line with many other research papers that also fail to recognise that some autistic traits may actually be beneficial. However, my biggest concern about this paper is how they use CARS to evaluate the effect of the drug for “treating” autism and then justify the use of the drug.

    The CARS protocol is probably good as a screening test for autism: http://www.oreilly.com/medical/autism/news/diag_tools.html#CARS. Scores are for instance given for echolalia and stimming, which is perfectly fine as these are autistic traits. However, that is not the same as saying that the aim of treatment should be to remove them. Echolalia is an important part in the language development of autistic children, and stimming is a natural behaviour that can improve emotional regulation and prevent meltdowns in stressful situations. Thus, using CARS as a “recovery” protocol is just wrong. The study states that the scoring significantly decreased by using the drug, but does not tell why. However, among the traits that CARS is testing, echolalia and stimming are probably the easiest ones to assess when rating from video films, so it is possible that these two traits were reduced for the children who got the drug. What are the implications of that? Did the drug remove something that is needed for the autistic brain’s development? If echolalia is important for language development, is it really a good thing to reduce it through drugs? Autistic traits should only be reduced through natural development by acquiring new skills, with comfort and support from loving educators.

    The problem I see with this paper is not only the way that it was written and done but also how it was accepted by a peer-reviewed journal with a quite high impact factor, apparently without questioning the things I just mentioned. Remember, this is one of many such papers with a focus on treating autism like it was a disease. The outcome can be really bad. Since this drug is already on the market, it is possible for parents to get it off-label already today. Bumetanide is not without side effects. In the study, seven children got hypokalemia and had to be treated for it. More importantly; what if it is reducing something that is really necessary for acquiring the skills that a normal children get for free?

    Given that the wiring of the autistic brain is different than the “normal” brain, it is clear to me that the development of the autistic brain and the way autistic children acquire specific skills like language must also be different. The aim should not be to remove “abnormal” behaviour through drugs or force. I thought history had taught us that much. Indeed, autistic children do have disabilities that normal children do not and they need help to overcome their problems through education and training, but the other way around is also true; for instance the ability to focus on their special interests that may well become their profession as adults. Is that perhaps a disability in normals? Lack of special interests? Should they get drugs to help them overcome this problem?

    I want to end with the words of Hans Asperger, from the English translation of his 1944 paper ‘Autistic psychopathy’ in childhood; words that still seem so distant when you read some of the “research” published today:

    “The example of autism shows particularly well how even abnormal personalities can be capable of development and adjustment. Possibilities of social integration which one would never have dreamt of may arise in the course of development. This knowledge determines our attitude towards complicated individuals of this and other types. It also gives us the right and the duty to speak out for these children with the whole force of our personality. We believe that only the absolute dedicated and loving educator can achieve success with difficult individuals”.

  • MaryTormey

    Researchers seem very lost, without us. i am working on a scientific explanation of how and why my nervous system is different. The combination of sodium fluoride and other toxic chemicals with limited salt lead to unusually high sodium fluoride levels in my nervous system, because F- ions are smaller than Cl- ions they react differently in my nervous system. I would need less GABA to open my membrain. This would throw off 1 of the around 500 metabolic reactions known to occur in a typical cell, thus altering other reactions as well as my perspective of time.

  • Julianna

    As an autistic adult I’m really pleased with this post , however, there is one huge omission, namely that of consulting first and foremost autistic individuals. The families do not understand /experience autism from the inside and observations are interpreted by their neurotypical lens which says more about Neurotypicality than it does about autism. Assumptions, assumptions are no replacement for listening to the actual lived experience. We are here on the planet yet researchers on the whole prefer not to relate to and with us but to their own kind, non autistic about us. Credibility would be better served by asking us . Once again Shannon I do applaud your content but not the weighting given to families above autistics.

  • Seth Bittker

    I applaud the idea of more researchers reaching out to those with autism and their families to learn more about the condition in the real world.

    I disagree with the point about difference vs deficit. We should refer to the significant limitations that are often fundamental to autism as deficits (when in fact they are) and we should not shrink from searching for way of ameliorating these deficits.

    For example there is solid evidence in the medical literature that a majority of those with autism have biochemical abnormalities (high oxidative stress, sulfation deficits, methylation deficits, vascular damage, etc.). These abnormalities are unhealthy and if we just think of them as differences we may lull ourselves into thinking that we should not attempt to address them.

    Relatedly my main concern about most autism research has little to do with how findings are presented and whether or not the presentation is offensive to some individuals. As a parent my main concern is that most autism research is of little value and some is completely useless. Why do more studies of how behavior is different between subgroup X and subgroup Y or how reaction times of those with autism differ from controls? It would be wonderful if more researchers examined the biochemistry of this disease and tried adjusting the dysfunctional biochemistry with candidate compounds.

    • Julianna

      I have no problem with the study of both biochemistry and neurology with regard to autism, however, I strongly feel that those adults on the spectrum who are willing and able to communicate their existential experience should be sought and not relegated to the periphery. Or even worse be relegated as less valuable than their parents/carers etc who often are non autistic.

  • Ramon Fonseca

    How’s about listening to those that are autistic first? We do have a voice, and it deserves to be heard, we deserve for our opinion to be taken into consideration. But it probably never will be.

  • AutismDadd

    Funny how some people INSIST on portraying autism as positive by criticizing those who see and live with the most severe forms. They claim acknowledging the seriously injured is wrong and focus should be only on the high functioning.

    • Ramon Fonseca

      I believe this type of thinking is wrong, but those who are severe are still people, and we need to focus more on alleviating the struggles they go through as a result of having autism rather than curing the autism its self. Autism is a beautiful thing, and if we could just accept those who are autistic for who they are, they would be better for it and studies like this idiotic one would be replaced with “breakthrough on the personal experience of an autistic person!” and “Autistic person finally feels safe and happy in their environment.” Have empathy man. If you have autistic children, consider what they are going through rather than ignoring that only to see what they do as a result of the constant extra stimuli from the outside world.

    • Matt Carey

      It’s sad that people can’t accept portraying autism as neutral. My kid is autistic. My kid has multiple disabilities and needs a great deal of support.

      Portraying my kid as damaged, “severe”, “seriously injured”, or other terms hasn’t really helped achieve the level of support he needs.

      Give the abject failure of that approach, I see nothing wrong with taking the approach that perhaps if the public respected my child, the public would acknowledge the shared responsibility we have to provide support for the disabled.

      Can’t fail any worse than the negative approach.

      ” They claim acknowledging the seriously injured is wrong and focus should be only on the high functioning.” Well you should be happy with this discussion because that hasn’t happened.

      • AutismDadd

        I’m not responsible for your child’s injury or how he’s treated. Take that up with those who are responsible.

        • Matt Carey

          “I’m not responsible for your child’s injury or how he’s treated. Take that up with those who are responsible.”

          Odd, I never stated nor implied you were responsible. Especially since my child is autistic and not injured.

          Since you didn’t understand my comment, I’ll summarize: Your approach to advocacy has failed. Repeatedly. Perhaps a new approach is warranted.

          I do not understand why people fight so hard to have autistics respected rather than portrayed as victims and objects of pity. I accept that it happens. I accept that it happens from people who believe for some reason this is beneficial to autistics. But why people try, try hard, even in the face of repeated failures to accomplish anything, is beyond me. And that’s leaving out the obvious question–why push an idea that is so clearly harmful.

          • AutismDadd

            That’s your opinion.

          • AutismDadd

            So Mr leftbrainrightbrain we know who’s side you are on.

          • Kathy

            That is a wonderful blog, isn’t it? I have been reading it since long before Dr Carey took it over. He runs it just as well as Kev did. Both are autism dads, scientists, advocates for autism, and all around great people who contribute a great deal to autism science and advocacy.

          • I can tell you why I fight so hard to have autistics respected even in the face of failure so many times.

            Because silence can be so much more deafening than speech sometimes.

  • Claire Cameron

    Hello everyone! Thank you for taking the time to read this article and thank you for sharing your thoughts with us! We greatly appreciate it. We’d like to remind everyone of our commenting guidelines, which you can freely access here: https://spectrumnews.org/about We hope to maintain a safe, inclusive space for people to share their views and opinions, and we hope you will help us do that! To do this, if any comment is deemed to not adhere to our guidelines, we will moderate or delete the comment. If you are unsure if a comment meets the guidelines, or have a question about them, please feel free to email community@spectrumnews.org. Thank you!

  • Yes – please please please please at least ASK an Autistic/autistic person to weigh in.

    NO – the mother/brother/father/sister/aunt/uncle/nephew cousin of an Autistic person is NOT the same fricking’ thing unless said relative is also autistic.

    • AutismDadd

      No takers I see

    • Kathy

      scroll back up and read Rachel’s comments.

  • Shannon

    I appreciate the article and the comments below. Among other such initiatives, the Autistic Spectrum Disorders report, based on the National Birth Defects Registry (http://www.birthdefects.org/national-birth-defect-registry/) hopes to gather anecdotal evidence of accompanying disorders. When an autoimmune condition is an elemental trigger, managing the other resulting disorders–like IBD–makes parenting even trickier.

close

Log in to your Spectrum Wiki account

Email Address:

Password:


close

Request your Spectrum Wiki account

Spectrum Wiki is a community of researchers affiliated with an academic or research institutions. To be considered for participation, please fill out this form and a member of our team will respond to your request.

Name:

Email Address:

Title and Lab:

Area of Expertise:

Comments: