What it means to have acceptance of autism

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“Acceptance of autism” is seen by some as a passive and defeatist stance, by others as a positive first step towards the best future for your child, and by yet others as an un-necessary statement that implies either a negative view of autistic people, or un-necessary because “autism” is a meaningless word. These variations don’t simply imply different attitudes towards autism; they are also evident of different meanings of “acceptance.” To further complicate the matter, crucial explanatory / contextual words are often left out when people talk about their acceptance of autism (acceptance of the existence of autism, the challenges of autism, the permanence of autism, etc).

In this post I am going to attempt to tease apart some of these differences, in an effort to provide clarity to debates and arguments that include the question (or accusation) of whether someone has accepted autism or not.

The word “acceptance” often imports an inherently negative attitude towards whatever is being accepted. For example, you might accept cancer, but there would be no need to accept that birds sing beautiful songs – there is no “coming to terms with” the latter. In this way, “acceptance” is referring to a mental state.

In this initial sense of the word, some people will always take offense to the notion that one needs “acceptance” of autism; since it is not some negative thing that one has to come to terms with. However, discovering that someone has autism may initiate a grieving process, which need not be seen as a negative thing either; the grieving can be the adjustment and learning process through which a parent (for example) comes out the other end better informed and armed with the attitudes and skills that will help their child. So, coming out the other end of the grieving process might be called acceptance in this initial sense of “coming to terms” with autism, but the attitude that is arrived at may itself be particularly positive.

Which is to say – accepting autism might mean the person has moved from a negative attitude towards a decidedly positive one, or it may mean they saw autism as negative, and have accepted that negativity at a cognitive level (perhaps moved beyond denial).

“Acceptance” of autism can also refer to the existence of the condition. Autism is – after all – a contested term which is essentially defined by a grouping of symptoms designated from time to time by professionals in the field (rather than by, say, a simple blood-test or physical malformation). This type of acceptance can also be part of the initial meaning (accepting that person X has autism), since learning what autism is, is part of that process of coming to terms with person X having it. So accepting autism in this “existence” sense, can mean two distinct things; accepting that autism exists as a condition, and accepting that autism is the condition that person X has.

Once someone accepts autism in the “coming to terms” sense, and the “existence” sense (in both forms), there comes the question of what they do about it – here I mean specifically in regards to coping with the symptoms. Again, there is more than one meaning here: They might accept autism’s symptoms by their inaction (“this is autism, I fully accept it and its manifestations”), or they might accept it by their action (“this is autism, I fully accept the challenges it presents and are ready to meet all of them with open eyes, dedicated to the task.”) These two types of acceptance in regards to the symptoms, are quite opposite in the resulting activity caused by the attitude.

Closely related to the above version of in/activity autism acceptance re symptoms, is acceptance of autism as a permanent condition. Here, accepting autism gets tied into the question of cause and cure (whereas above it was re the symptoms). If you “accept” autism in this sense, then some will see you as giving up on the fight for a cure: “I accept autism / I accept that it can’t be changed, my son will always have it”. This is often thought to include inactivity re symptoms (the previous type of acceptance) – but this is not necessarily true. You might accept that autism can’t be removed (that the child will always have it), yet be extremely active in efforts to alleviate the severity of the symptoms.

The question of permanence – whether someone can be rid of autism or not – is separate from the acceptance of autism as inherent to the person. So, you might be attacked for not “accepting” your child – despite loving them, fighting for their rights, working on improving their skills, thinking it’s permanent, etc – because you haven’t accepted that your child is inseparable from autism. So if you were to say “I don’t think there will ever be a cure, and I love my child completely, but if there was a cure I would give it to my child”, you may very well be accused of not accepting them (often without further explanation of what it is you’re not accepting).

All of these variations might be meant when someone says “I accept autism” or “I don’t accept autism”. The context will not always make their meaning clear, and frequently people do not elaborate on what they mean by acceptance either. I have attempted to elucidate the most common meanings (categories) I have come across, and to show how there are also variations within those categories. So, to summarise thus far:

  1. “I accept autism” coming to terms sense: “I have come to terms with autism” (may be a process from negative to positive, or negative to accepting a negative).
  2. “I accept autism” existence sense: “Autism exists” (may be in relation to the condition, or/and in relation to someone having the condition).
  3. “I accept autism” in/activity sense re symptoms: In/actions re symptoms, reveal that they know this is autism, and their attitudes towards it. As in “my acceptance of autism is seen in how I am dedicated to the task of helping my autistic son” or “my acceptance of autism is seen in how I fully accept and do not fight its manifestations.”
  4. “I accept autism” permanence sense: “I accept that autism cannot be removed from the child”.
  5. “I accept autism” inherent sense: “I accept that autism is inherent to the child’s being / personality, so that to fight or feel badly towards autism, is to fight or feel badly towards the person affected.”

There is one more key element that I think must be mentioned to clarify debates and underlying emotions that involve the question of acceptance of autism. That is recognising categories that refer to superior knowledge; access to an objective truth that others must also reach before they too have seen the light. And categories that refer to the correct or superior attitude, making those who do not hold the same acceptance (or non-acceptance) as unworthy (morally, or as parents, etc).

Categories where superior or objective truth are part of the claim, are 2, 4 and 5. So if someone doesn’t accept autism in those meanings, then they might be told they are ignorant. Categories where superior attitude is part of the claim, are 1, 3 and again 5 (which is perhaps why 5 is so often debated and so emotional – it comes under both categories as I’ve presented them here). So, to not have (or to have) accepted autism under those meanings, can be seen as grounds for moral judgment.

There are obviously other ways in which people leave out the “of” or “that” when they talk about acceptance of autism (“acceptance that autism…”, “acceptance of autism’s…”), but many of the other examples I can think of, are either expressly stated at the time, or they fit into the broader categories captured in 1 to 5. For example, the claim “you need to accept that mercury causes autism” might be expressly stated, or comes particularly under category 4.

Have I messed up this analysis – made it overly complicated or unhelpful – have I overlooked some core categories or meanings? Probably! This is just one night’s musings. Do let me know how you would have changed or refined it. Regardless of its precision or gaps, I hope I have made it clear that the question of “accepting” autism – and the moral and intellectual judgments that come along with statements of acceptance – are not one question, but many, and to avoid un-necessary upset and confusion, it is always worth making it clear what is being accepted: “Acceptance of autism” does not say it all.

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19 Responses to What it means to have acceptance of autism

  1. Sharon says:

    A question I ask is, what if I do not accept Autism? What self deception and risk do I place myself and my child in if I refuse to accept that it is what it is. If I choose to reject instead of accept there is no progress. There is also potential for harm. Ive never been one for denial.

  2. Betsy says:

    What a very interesting post. I think there are as many definitions of that phrase as fingers on our hands. The way I’ve heard it used most often is when parents say that they accept their child’s autism, it means they accept their child just like they are and will not seek to improve their condition with treatments, medication, etc. They believe trying to change or improve the autism is equal to saying they don’t love their child just as they are. So in that light, acceptance has a negative connotation instead of positive, at least for me. Sure you can love them but I think we should do everything we can to help them reach their full potentials and have the best quality of life possible.

    That said. …thanks for stopping by my blog today! It’s always great to meet other parents like me. Love the header and the mantis…what a great shot with those eyes looking right at you! Not to mention the sweet little boy fingers! 🙂

  3. Katie says:

    http://mattyangel.com/2011/06/07/dear-asd-community/

    Thought you may want to read this, though you may have already read it as its related to this very topic! A kind of,

    “I accept myself some days, and not other days, and I can’t fit into one group”

    • Very nicely said. I can understand his frustrations. The dialogue can’t / won’t stop of course – there are answers to be found and there are consquences that flow from those answers – but it is so important that people don’t suppose to speak on behalf of all people within a group. I mentioned this idea explicitly in my previous post.

      Thank you for sharing Matty Angel’s thoughts 🙂

      • Katie says:

        Well I found it interesting, and such a valid point. People need to stop talking on behalf of others, constantly. I am sick of those groups run by parents that start going around saying they talk for all parents.

        There was an issue where these groups (Won’t name names) began protesting and putting up a fuss saying those with autism should not be in special care/group homes… Well sadly that was the only place where my friends severely autistic son could go, no one else had the care facilities for him and to keep him in a learning environment, that is what they had to do for everyones health and wellbeing.

        We need to realize everyone is different so whats not right for one, maybe right for another.

        Thats why the whole “acceptance” topic is so touchy, because everyone with autism is different, what we are accepting for one child/adult will never be the same for another

        gees, hope this makes sense.

      • lol, absolutely makes sense!

        And your example is close to my heart and own experience Katie. My son attends a special-needs school, where he is thriving and happy and his teachers are dedicated to getting the best out of him. We were shocked to hear that one of the local intellectually-disabled-charity-groups had been campaigning to shut down ALL special-needs schools, in favour of full-inclusion. Fine for some, sure, but not for our son. I was angry (to say the least) that they dared to speak on behalf of us and our son, and that their arguments did not align with the reality that special-needs schools play an absolutely vital role in many lives, for the betterment of those children. We’re not stuck in the dark ages with drooling kids in the corner – forgotten and unchallenged. Some institutions do treat children in such a manner, but they get discovered, investigated and shut down, like any abusive situation. That doesn’t mean all special-needs schools should be shut down, anymore than a bad mainstream school means all mainstream school should be shut down! Yet that is the lunacy I often encounter.

        I’ll step down from my soap-box now! Suffice to say, I get what you’re saying 🙂

  4. KWombles says:

    Acceptance (at least as I think I can reliably say for Kathleen and I and how we use it) isn’t acceptance of autism, but of the person. Our position is that Acceptance, Accommodation, Awareness, and Action are key to making the world a better place for our children.

    • There’s a problem with that shift – from “acceptance of autism” to “acceptance of the person”:

      (1) It’s just another way of saying “acceptance of X’s autism / X and their autism / X who happens to have autism / X regardless of their autism”, which still leaves you with all the same questions: That X has autism, that autism exists, that their autism is permanent, inherent, etc.

      And / Or,

      (2) It presupposes answers to the vital questions of category 5 – that autism is (or is not) inherent to the person. “I accept person X” might be a different question from “I accept autism” – for some people those questions are separate, for some they are the exact same thing – that is the problem itself (for category 5 anyway).

      The list of “Acceptance, Accommodation, Awareness, and Action” is an important list, but without any specifics or context, it just creates a lot more questions, and indeed leaves divisions in place: Acceptance of what precisely (covered in the post), accomodation in what ways (do we attempt change the world for autistic people, is that even possible, is accomodation in all ways even in their best interests, etc), awareness of what (that autism rates are climbing, that X causes autism, that autism is good / bad; “awareness of autism” in itself seems to lead to a lot of debate and confusion – the recent fights over what message should be sent in autism awareness month case in point), and action is just as problematic (action to reduce the numbers, action to reduce severity, action towards scientific research, action on existing supposed causes of autism).

      I’m not trying to be contrary – I applaud what you and Kathleen have achieved and continue to achieve – it’s just that such words can pull in contradictory directions, and it seems to me that the clearer we are about what we mean when we use these words, the more traction we will get towards improvements in the lives of autistic people. (Or in the lives of all people – regardless of their autism – if you prefer. The problems remain – arguably even more so – when we extend the category in this way beyond the question of the relevance of autism.)

  5. Bill says:

    I am endowed with Asperger’s (at least I’m pretty darn sure)

    I became uncomfortable about twenty years ago, when I read an article about autism studies in a science magazine, and it hit too close to home.
    In 1998, when my brother called me to tell me he had been diagnosed with Asperger’s, and that he thought I probably had it too, I accepted the news cautiously, but it actually came as a relief to understand why I perceive the world so differently, and why some of my boys were far from the mainstream.
    I have always been “jumpy”, but when my startles became so intense I was getting injured (falls, broken ribs from gasping, shattered teeth, torn muscles and tendons) and sought professional help, the shrink answered my question, “do you think I have Asperger’s?” with a wave of the hand, like, “was there ever any doubt?”
    Like many Aspies, I am hyper-moral, and conflicted. Morality is a good thing, right? Yet I have had to leave four jobs because I could not tolerate illegal things that everyone around me routinely accepted, and I feel like a fool, but “everyone” says the people at, for instance Enron, who knew what was going on and did nothing were “evil”, yet the reality is that normal people do not quit, they shred.
    I still ask my wife, “do you think I have Asperger’s?”, and she still tells me yes, and I ask, not because I haven’t accepted it, but because being hyper-moral I could not bear to live life as a fraud, representing myself as something I was not, even if in the real world I have to hide my Asperger’s in a closet, lest my employers or clients find out, because who would trust projects worth tens of millions of dollars to someone who is autistic?

    You are very correct in pointing out that acceptance of autism has many facets.

    • Wow Bill, as usual, an eye-opening and highly original response.

      I was just reading the other day about autistic people and hyper-morality; a very interesting topic. Excellent example of how this can impact an adult’s life too (we far more often hear about how it singles out children in the classroom for holding their classmates to account, leading to bullying). Thank you – as always – for sharing your experiences and perspective.

  6. Most Neurodiversity activists would get offended by comparing autism to cancer. This comparison has been made before and harshly criticized. Neurodiversity is a cute concept for cute disabled people (like sending a person with Down’s Syndrome to college) but it doesn’t do much for the LFA: the fecal smearing, non-verbal, variety. I accept my disabilities but if a cure were available I would take it: they cause me unnecessary amounts of pain and just general annoyance and life would be much easier if I wasn’t disabled. But, since I am here I should “celebrate” them, right? Not really: I don’t really celebrate being white, female, Buddhist and etc. But, then again, these don’t cause many problems for me, unlike disability. Most people aren’t disabled while 50% of the population is female and so on and so forth. Plus, you can’t be “profoundly” female: being “more” female doesn’t cause problems for a person in society like being proufoundly autistic does.

  7. Sunshine says:

    I just love your approach to language and semantics. The way you dissect and analyze the different meanings one word can express just blows my mind. Thanks a bunch!

    • Thank you Sunshine!!
      It’s a bit of a hang-over from both my philosophy and law days, where the meaning and nuances of words can create or ruin entire arguments. Lots of geeky fun! 😀

  8. I love, love, love this post! When my brothers were adopted (four with multiple diagnosis, including autism) the only acceptance teachers, professionals and neighbors suggested (rather loudly) was of defeat. But the word ‘accept’ simply means to say ‘yes’ with good grace. So, even to accept defeat can be positive. If you do it with good grace then you must do it with a smile and an energy that allows for learning and loving. I can’t imagine ever ‘accepting’ a diagnosis without believing we can move forward, gain skills and learn from our mistakes. I know others say they do but that is not ‘accepting’, rather ‘giving up’. Semantics is so important but can be painfully confusing as well. I happen to love the word ‘clever’, not for any reason other than I think it’s fun to say. One day a neighbor, concerned that I was having self esteem issues about my own intelligence, suggested I kept calling things ‘clever’ because I was worried that I was not. I laughed so hard I pee’d a little! How wonderful to remember that we all have our own histories with words and their meanings. I think it is so important that we don’t speak for others (thank you Linda for reminding us!) and try not to assume we know what others mean when they speak. Having said that I want to give a shout out to this wonderful word… acceptance. I can’t tell you how much the world has changed when we can dissect this word and it’s meaning for the autistic community. My brothers – and in turn our family, especially my mom- had to fight so hard for any acceptance at all. Thanks to conversations like this….

    • Thank you for adding those thoughts and perspectives Tsara. I particularly like your acknowledgement that “that we all have our own histories with words and their meanings.” So very true.

  9. heather says:

    I appreciate the attention to the semantical differences in definition, and how it’s very easily influenced by emotion and understanding as to which one you choose to adopt! I currently work in a level 4 group home for young men with autism. This is not my first experience. I’ve also worked in the home and community settings, as well as larger institution type environments. It’s fulfilling work, if it’s done correctly. The home I’m in now was created by the mother of 2 of it’s residents. She is the owner of the program. I can see why she would want to create the home in order to avoid having either of them put in an institution. However, I’ve also come to realize that the conflict of interest can be great. Her personal acceptance and definition of the state of her sons is probably different than the people who work with them everyday. I know the clinical understanding of autism, and the idea behind processing delays. I also know about primary and secondary diagnosis. I am having trouble accepting the concept that if someone has autism, they are incapable of having bad behavior that is not directly related to the autism (If it’s an autism related behavior, it’s neither bad nor good, just a matter of functionality and preference.) If this is the way a person is physically built, and they are always going to be autistic (and in some circumstances can learn to be more functional, or not), then how can it be that they are, as human beings, incapable of developing character flaws like all humans do? It seems to me as though it’s widely viewed that in order to accept the diagnosis of someone with autism (primary or secondary) means you have to accept that everything they do is simply a function of their condition. This would automatically mean that autism can only be a primary diagnosis, and anything else you wish to treat that the person may have cannot be truly defined by traditional diagnosing techniques. Processing delay/disfunction does not mean there isn’t room for independent thought, as far as I’m aware. And of course we want to help these people become more functional, independent, and well-adjusted. But to say that they are incapable of the wide variety of human personality traits that occur when autism isn’t present is essentially the same thing as saying they aren’t capable of maturing or developing emotionally, psychologically, or adaptively. Isn’t it just as plausible that if they had been born without the condition, they would have had the same capacity to be brats, or spoiled, or overly sensitive? To deny the possibility of the independent thought that creates those types of personality traits is to deny their humanity. Just because you have autism doesn’t mean you are excluded from being a jerk, any more than you can be excluded from being a kind person (behaviors or not).

    It may just be that because of the communication difficulties, people want to assume the best, which for most parents means “accepting” that anything their kids do is because they are autistic. It’s sort of like saying that a serial killer with a primary diagnosis of schizophrenia (from birth) and secondary diagnosis of borderline personality disorder (from a lifetime of abuse), only killed those people due to him having been born with schizophrenia, and we should accept that they couldn’t help it. Not all people with schizophrenia kill people, just as not all people with BPD do either.

    There is both nature and nurture factoring into everyone’s behaviors, no matter their condition. There are NO guarantees as to what behavior came from what trigger. You can observe this actively when a treated behavior remains, but the function of the behavior changes. If you run an ABA based treatment program (which is the most popular, and so far, the most successful), they expect you to “objectively” report what you see, and a Behavioral Analyst will then translate the data into what they perceive is the function of the behavior (stimulation, avoidance, attention seeking, achieving a reward, etc.) There is room for personal error there because you are drawing conclusions about what is going on inside by observing what’s happening on the outside.

    I accept autism exists. I accept that many of the behaviors are due to frustration with the world they cannot adequately communicate with, or from a need for different forms of stimulation, due to their unique perspectives on reality, and the way their senses function. I cannot accept that autism is the only factor present when a person makes a decision to do something that is not socially acceptable. We all have unique perspectives on reality, and we all have various levels of aptitude and adaptability. I just don’t understand that when I look around online to see if there are any other perspectives on what they are experiencing and seeing, I have not been able to find one negative thing that anyone is willing to say about people with autism (other than their own frustration of dealing with autism related behaviors…)

    • Love your comment, lots ot think about, and lots I agree with there.

      You won’t have to search far really to find lots of people pointing out that autistic people are not all predetermined / faultless angels (I’ve done a few posts on this, but via precise topics or examples rather than as an overall point). There are also plenty of people ready to attack autistic people for things beyond their conscious control (such as trouble reading other’s mental states and understanding nuanced communication). But I do take your point; there is a lot of rhetoric treating autism like it determines and controls much more than it evidently does.

      Thanks for your comment heather.

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