Google that term and one is faced with a lengthy list of deficits. The definitions of autism are cloaked in subjective language. All the words used are in relation to non Autistic neurology: “severe impairment”, “life long developmental disorder”, “social impairment” and one site went so far as to say, “A mental condition in which fantasy dominates over reality, as a symptom of schizophrenia and other disorders.” None of these “definitions” have been helpful to me, personally, nor have I found them to be factually correct. The most common definitions of autism out there have increased my fear and encouraged me to pursue therapies and treatments that have done far more harm than good.
People often ask, “so what is autism exactly?” Over the years I’ve had a variety of responses, but like the definitions above, they always seemed inadequate, unhelpful and inaccurate. So now, when I answer that question all I can come up with is this: Autism is a type of neurology. Short and sweet. No judgment, no comparison, just six words. It is a neurology. It’s the best way I know of to describe what is often mired in negativity and judgment.
Comparing Autism to non autistic neurology has gotten me into a great deal of trouble over the years. I have found it is important that I avoid doing that. (I’m keeping this personal. I speak only for myself and do not presume this is how others feel.) For years I worried about my daughter’s ability to have friends. If I believe the common definitions of autism, her ability to make friends is “impaired”. Yet the impairment is less about her desire and attempts to have friends as it is about non Autistic neurology being out of sync with hers. When Em was in Florida with her friend Henry, they had no problem hanging out together, laughing and enjoying each other’s company. Just because they typed to each other and didn’t engage in endless verbal conversation, didn’t mean they didn’t have a blast together.
If I listened to and believed the definitions of autism, I might think my child couldn’t learn to read or write. I would be wrong. Not only has my daughter learned to read and write, she also has learned to type. Because I no longer believe the common definitions regarding autism I do not limit what she should or shouldn’t do. I do not limit her future with set ideas about her future capabilities. I have found it helpful to disregard those organizations and people who insist that Autism is a dreadful “affliction” and compare rates of autism diagnosis with cancer.
So what is a longer definition of autism?
It’s a terrific question. Finding an answer that is factual as well as helpful to me, has been difficult to find. However there are a few who have done a terrific job defining autism and in doing so have also helped me, personally. Autistic Self Advocacy Network (ASAN) defines Autism ‘here‘ and this post by Brenda, over at Mama Be Good, gives a great, comprehensive answer to the question and at the end includes her personal observations of her child and what it’s been like to parent an Autistic child.
So I ask you, how do you answer the question – What is Autism?
Em on her way back to Henry’s house – April 2013
Love that post of yours Brenda. Just love it. The first time I read it, the second time I read it and the third time too!
I am Autism: http://ireport.cnn.com/docs/DOC-957601
I read this a few days ago! So glad you posted the link here. Thank you!
You read my iReport? I didn’t expect so many people to read it or enjoy it. I am glad you liked it.
Yes! Someone posted it on Facebook. It’s been making the rounds! So glad you wrote it.
If you have the time and inclination as well as the interest; I am posting my body of work, at least a great deal of it… on my facebook page. Everything I have designed, conceived and planned out was with the sole intention of helping every member of the ASD community and getting rid of the financial burden assosiated with the help that we need to thrive.
Serving others shouldn’t be a way to make money, at least that should not be your primary motivation. Our children’s futures should not be reliant on the ability to afford therapy sessions and families should never have to fall apart over financial burden.
What I created is meant to change the rules for all of you. It is meant to belong to all of us. It is my dearest hope that by posting this much of what I have created, envisioned, and started to build that you will become more engaged and interested. Maybe what I am trying to do will inspire you, and help you create your own new way to help others.
I love this post Ariane. You’re short and sweet definition is perfect. It’s flawless in it’s simplicity and it doesn’t leave room for ideas of inadequacy to stir in the reader/listener. I wish I could use it all the time, but sometimes for educational purposes I feel I need to give more – and like you, I used ASAN’s version. I feel it is the most complete.
When I google searched “What is Autism” a few months back I too was shocked by what I found – as were some members of the group we both belong to on facebook. It’s so shocking because, although we all know prejudice is out there, it’s still surprising when you find it. It’s no wonder that Autistics have to fight for civil rights when the mere definition on the web (and in dictionary’s) does absolutely nothing but further the idea that their neurology makes them somehow less than.
I’m still hoping that one day Autistics will be allowed to write their own definition.
I love all that you do and are.
Thank you so much!! 😀
Autism is not a condition. It is a construct that has been interpreted by different professionals for different purposes. I would suggest we approach issue of definition carefully, because it often determines the actions we take in addressing any challenges we experience on the journey.
Agreed, autism has a neurological basis, which is not surprising because the signs and symptoms of children with the regressive form of autism in particular, mirror that of children who have experienced brain injury, due to various causes, in one form or another.
The effectiveness of autism therapies will vary, depending on the causes (yes there are causes), range and type of signs and symptoms, including co-morbid conditions existing in the child. A one size fits all approach to autism management, thus, is the worst disservice that can be done to a child.
I really believe you cannot define what autism is, till you first ‘deconstruct’ it. Your definition of autism will be subjective to your personal experience.
Like some enduring works of art, you may have to provide reinforcements or take the pieces apart first, in order to put them back together again in the most beautiful, enduring way. When all fails, take a step back, deconstruct the spectrum and build again and then you can truly define what autism is or means to you.
Thanks so much for sharing your thoughts on this. Really appreciate it. “Autism is not a condition. It is a construct…” Really like that.
Medicalized deficit-based language continues to be neccessary to provide insurance coverage for many kinds of therapies and also if one wants SSI income. In and of itself, in the medical realm, deficit based language is not problematic. The problem comes when we take the deficit-based medical language and use it to talk about the humanity of autistic people. Unfortunately, this is exactly what the general public has done. It isn’t the fault of the deficit-based medical language, but the fault of the user bringing this language outside of it’s intended realm and used in ways it was never meant to be used. It isn’t the language that is wrong, but the way it has been used to describe our humanity by society at large that is wrong IMHO.
I wonder though if it wouldn’t be far more productive if we described the accommodations needed without the dehumanizing language.
I like it “Autism is a type of neurology.”
I like this.
The funniest definition is that Autism is a disorder where a person suffers from a developmental delay. As if given enough time an autistic person could be exactly like a non-autistic person. It makes me think of a person who decides to like game of thrones 4 years after its been out and acts out their 20’s when they are in their 30’s. That I am going to do the exact same things as everyone else only delayed. Instead, being Autistic seems like it is a completely different tract altogether.
I so agree with you. It’s not a delay as much as a different operating system.
Though, I do wish it was simply a delay. Like a 5 minute head start for everyone else and then we could start lowering the gap and catching up.
Yup, totally agree with this. I think the entire trajectory on which we develop skills and emotional maturity is not a wrong version of how normal people do it. It’s a totally different train track. I’m 30, and I’m still not anything like a typically developed 20- or 25-year-old, and never will be.
Defining autism to me is like trying to define humanity. As soon as the definition begins to get too specific it becomes interpretation and judgment. I like Brenda’s explanation a lot because it focuses on the positive and the fact that we are talking about variety. It is the one I used with the grandparents to help them understand without the fear rhetoric and the judgement of many professionals.
Language that implies judgement (deficit-based) should not have any place in medicine or research. It dehumanizes people. When our society focuses on “causes” we dehumanize people. Is there a cause why one person is an artist while another is an engineer? “Cause” implies something outside that works on the person; it does not respect variety in neurology. What are the causes for any number of variety in humanity? In nature? How does that research help us move forward as human societies to embrace variety?
The first definitions of autism were there to identify, label, and categorize for medical; they treat autism as a disorder and can only define autism in contrast to what is viewed as “typical.” They are negative and judgmental, and they are used for a variety of reasons (i.e. fear, fundraising, insurance, treatment), but they continue to dehumanize.
However, from that negative, I am heartened to can see something positive happen when autistics take that term and make it an identity, a self-description, and a positive form of community. It is like the names applied to any minority group, it can be redefined and assimilated. The hurdle now is to take that term away from the “deficit-minded” professionals, and claim it as identity.
Human variety can be a beautiful thing. I’ve learned that my child’s communication is not regressed or delayed; it is complex and different. It involves more sensory details, movement, and body language than most of us can easily process or understand. But it is there, and it is valid. And it is beautiful.
Loved reading your comment. Defining anything limits it, by the very nature of definition.
That’s the exact issue I actually had with the developmental delay term even when I was studying how clinicians use those terms and working in a field where it became clear enough that was a politically correct substitute for everything they didn’t want to acutally name (which was the opposite of helpful for the actual work)
I really did think I would catch up and while I would have no issue if people used developmental in the clinical term and understood it that way making clear that some of the delays are things that may change but never be typical might be more helpful. I remember sitting in the back of my brother’s car in my late 20’s and realizing my nephew and his young friend were lapping me in psychosexual development when they both cheerfully explained something to me. I think I realized then that some areas were never going to catch up but the terminoly I think drives how often I get told to try harder.
I don’t even really have a problem in defining it based on the ways it deviated from typical as long as some thought is put into the fact that the typical may not be desirable which doesn’t seem to be the case ever. Given the chance autistics are among the clearest communicators there are in my opinion because a lifetime of assuming the communication disorder is your fault will teach you to overcompensate I think.
I do have it for the imaginary deficits. Like empathy and imagination. Empathy being more serious as although the misunderstanding around it is again caused by a difference in the clinical use of empathy and the popular use it is I think the single biggest threat to autistics right now that this has captured popular imagination. It is worse than when they thought us incapable of love and I’ve lived through both. I don’t know what it will take for the average researcher to understand that an unusual expression of things does not mean a lack of. Sometimes when reading the literature it seems like autism has been an area wheere a lack of scientific rigidity has somehow just slipped right along. Why? I’m past the mid way point in my life and no one has a freaking clue what to do about me. (That something has to be done we have consensus on it appears)
No matter what I write since I should have a lack of self awareness it is suspect. If they are inclined to believe no one was wrong about the autism then what I write can’t possibly be correct and if not then my ability to write things that are self-aware means I am not autistic.My dog is self-aware why don’t I get to be?
Gareeth, I can imagine how confusing it must be to be told you are “delayed”. I know how confused I was by those words when attached to my daughter. I have found it far more helpful to think of her as less delayed (which is again another one of those not helpful comparisons) and more different. I like the different operating system analogy. That makes sense to me, having used both Macs and PCs. Some programs are easier to run on one, while others are easier to run on the other.
That problem is there are some areas where delay actually fit to some degree although if course if your differences in some core areas were completely overcome then you would be ny definition not autistic. But having caught up with producing speech (if we overlook the impact stress has on that ability) , and having widened my grasp in things emotional (ever so slowly) it was I suppose too easy to think that all that was needed was time and effort and I would catch up and have the kind of life “normal” people have. I know there are some autistic people who managed some of the things the forever elude me.
I guess the main issue with type of neurology is while it is short and sweet it isn’t very informative.It should be possible to describe the core differences that have to be present by definition without making it as one way deficit model. If you called it a communciation difference say then right from the start you could plant the notion that behaviour is communication and that speech does not equal communication. But when it is described as a deicit and the failure to acquire various aspects on time is there then the focus is and has been for way too many decades on aquiring speech. I know for me that means when my speech fails (which it has been doing way too much lately) it causes more anxiety and embarrassment than it should because on one level I know it does that but another I retain the sense of having caught up with productive speech so being technically verbal it’s a huge hassle when I am not. They can write into my chart that it happens but 98 percent of the time they will still overreact when it does. (Or if they don’t read my chart talk to me like I am a gerbil – actually I always spoke to my own gerbils with less condescension so that’s a bad analogy.)
I think “a type of neurology” is accurate, but possibly too broad to help most people understand what that means to us.
I’ve gone with “a neurodevelopmental condition that affects information processing, language and emotional development.”
Lately I’ve been quoting the saying “It’s not a bug; it’s a different operating system.” Or explaining it as an alternate but not defective “configuration,” with core differences in how we process basic information, which leads to differences in how we feel, perceive, and use language. A configuration that has to be understood on its own terms and not in terms of how it’s defective compared to typical neurology. And the more I realize this, the more I realize that the conclusions of the deficit or pathology models about what the core deficit of autism is, just don’t make any coherent sense.
It is too broad, definitely. I like your definition a lot!
Ariane, this is off-topic, but I wanted your opinion, please, along with members of the autistic community. I tried to post this on Brenda’s comments as well, but for some reason it didn’t seem to be working.
I read something this morning that is very concerning and didn’t know where to share. Please let me know if you think this is concerning to you too. There is an article in the NYTimes about research for drugs to treat autism. That always sends up a flag to me as I am concerned what they are “treating.” This research is funded jointly by the NIMH and Autism Speaks. And the AS VP is quoted saying: “Autism spectrum disorder is the brave new world of medicine development, and most companies out there — despite a lot of the retraction you’re seeing — they do recognize autism as a clear area of opportunity.”
Opportunity???? Money. Those seem the issues, not safety and concern for people.
But what is even more concerning is that this new research at UCLA is part of the NIMH “Fast-Fail” initiative which: “aims to determine within weeks whether a drug works, rather than the years it traditionally takes to evaluate a new drug.”
How do you do that and maintain the safety of research participants? So I went to the NIMH site to read the description of this “fast-fail” program and it is disturbing. Here is a paragraph from that that explains it:
“Unlike standard clinical drug-testing trials, clinical trials in FAST will be small (about 10 to 30 subjects), and will be in human patients. Years of experience in drug testing suggests that positive results in animals do not necessarily translate to humans. With this type of testing, compounds that are found to engage a target in the brain, and alter an indicator (or biomarker) of brain function can quickly go forward to further testing. Negative results will avoid costly and time-consuming testing, and also provide information that will be helpful in designing future trials. The identification of new targets in the brain identified through this approach will broaden the avenues available for development and screening of new candidate compounds.”
So this is a government funded research into drugs that will use human subjects to fast-track drugs. Isn’t that against our testing standards? Is this being viewed as acceptable because it is autism and mental health researches? And who will make the decision about those test subjects?
I find this frighteningly wrong in so many ways. And it is being done this way to save money!!! There is little expression of concern for safety, because I guess they think autism is so terrible that people should risk themselves and their children for expeditious trials.
Does this raise red flags to you and to the autistic community?
This is very, very disturbing news. Thank you so much for alerting me to this. Wow. Yeah. Okay. Will do some research later… 😦
Ariane, please feel free to moderate and remove if I am over-reacting. Sorry to intrude on your discussions here, but I just wanted to know if I was reading this wrong or what.
Not an over reaction in my opinion. I have to read the original link you provided, but it sounds really, really worrisome.
Thank you, Ariane. I tried to post this on two other autistic advocacy sites, but for some reason it kept getting bounced.
Here is the NY Times article: http://www.nytimes.com/2013/04/25/business/public-private-effort-seeks-to-expedite-discovery-of-autism-drugs.html?ref=health
It has a link to the NIMH description of “Fast-Fail” initiatives.
I have been wondering the same thing lately.. How do you answer to the, mostly well meaning, question of another parent ‘what is aspergers actually?’. My son goes to a mainstream school, he has made a lot of progress with his social integration but of course, incidents happen and I don’t see why I should not say “he has got asperger’s. It’s a form of autism.” But I also know those who are asking back (a minority) do not want to hear a long scientific explanation or a long list of personal examples.
I’ve said “his brain works different. He does not process in formation and feeling the same way. It’s a bit like we all speak a different language in a totally different culture. He also can get stuck on one little detail or be overwhelmed when things get too much around him. This will never change, but I hope he can learn to speak our language..and he can teach us all a lot about his world too. ”
I can’t say I had profound discussions with parents of NT kids so far but I feel this is doing my son and the situation (usually the conversation starts after they have witness a meltdown or some other stress behaviour) justice. And if their kids mention him, they might have an answer that works for them too.
On the UCLA research, how disturbing that AutismSpeaks is on the consulting panel…?!