Passing for A High-Functioning Autistic; A Cause for Celebration..?

“Passing” in the autism world, is a word typically used to discuss the experience of an autistic person being expected or being successful in the endeavour to present themself as “normal” (or as “neurotypical” if you prefer). It is a mindful and frequently draining task that can leave the autistic person worse off than if they’d just “been themselves.” (I’ll leave the wonderful Rachel Cohen-Rottenberg to expand on this important point in her thought-provoking post “On Passing, Overcompensating, and Disability.”)

Yet “passing” was the word that came immediately to mind in relation to my clearly-autistic son during a recent conversation. I was meeting up with a family friend who happens to be a judge on special needs education cases in the USA. She knew my son was autistic, but when she met him she said to me “he must be high-functioning.”

I was somewhat stunned; I don’t think of my son as a high-functioning autistic: When he was diagnosed he was really quite severe. After years of therapy and interventions he has come an amazingly long way in his development. He no longer self-harms, he’s no longer violent to others and property, he can now speak in sentences and was finally toilet trained at four and a half. He attends a special needs school, but it has recently been decided to trial him in some mainstream classes because he is doing so well in a couple of topics, and his behaviour has advanced so beautifully.

But because of his severe beginnings, and because I’m so used to working so hard with him for so many years, I’ve been a little blinded perhaps to how he now appears to others. I know his social and communication challenges will be more obvious when he enters dreaded puberty – when these things begin to “matter more” (to his peers and to general public expectations; people tend to be more “forgiving” with young children’s oddities) – but as of this point in his life, it appears that to some people he can “pass” as high-functioning.

I don’t just use the word “passing” because of how I personally think (and have thought) of him; I also mean that he works extra hard to appear the way that he does to appear apparently “high-functioning”. He works hard to control his anxieties and to express himself meaningfully. He actively works on his social skills too; watching others and trying out what they do and then using our guidance as to whether it is appropriate or not. What might look like high-functioning autism in any other person (for example, someone who is simply being themself), is actually a product of amazing levels of hard work for my son.

I suppose for some people this is simply an improvement in his autism, and yes that’s obviously a large part of what is going on here. But I think to simply refer to it as an “improvement” (or lessening of severity of his autism) is to discount and not realise how much work he still puts in daily, hourly, into what others see when they look at and talk to him.

I want to be very clear that this “passing” (or more precisely, passing plus improvement) is not a result of us forcing our son to be someone he is not. He is a much happier person now than when he was severely autistic, he communicates his own mind, and is an incredibly loving (and loved) little boy. All we’ve done is equipped him to express his own voice, and enabled him to find more independence in his world (such as dressing, feeding, and toileting himself, rather than the stationary and repetitive behaviours that once sat in the way of even the simplest development. We have not “wiped out” his stims before someone accuses me of that – he still flaps and happy-dances, expressing himself as comes naturally – but we have “limited” them so they no longer consume such extraordinary amounts of his time and attention.)

That’s the problem with the word “passing” in this rhetoric in some ways; it incorporates an inherently negative view of what the person becomes (“other”) when to a certain extent what has happened is objective improvements in the person’s abilities and life skills. Perhaps there is (or needs to be) a better word for conveying that hard and unseen work is going on with the individual – work the rest of us typically don’t engage in or need to engage in – that needs to be known to really appreciate the achievements and get a deeper understanding of the individual. Perhaps what we need is both the word “passing” (to capture the harsh reality many autistics live) alongside a more celebratory word for the effort autistic’s make in the face of very real and under-acknowledged challenges.

So yes, I guess at some level, in a certain way, my son is now “passing” for a high-functioning autistic; because of how much work he puts into what he currently appears to be. But that word doesn’t truly capture the wonderful achievement and amazing work that also deserve celebration and recognition. I’m glad some people can now think of him as “high-functioning” but it still matters to me that they realise what it took to get here and how far we still have to go, in the positive sense of opening doors that once looked forever closed to him. No matter what words you use to convey these realities, the underlying truth remains the same: My son has amazed me, my son is amazing.

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31 Responses to Passing for A High-Functioning Autistic; A Cause for Celebration..?

  1. dixieredmond says:

    I want to come back and read this again, unpacking it carefully. I think you may have said something really important.

    One thing people don’t see are all the invisible supports that the person with autism, parents and others have set up to be successful in interacting with other people.

  2. Rachel says:

    This is the problem with an invisible disability, isn’t it? People have no idea of the effort it takes to navigate. If your son were a wheelchair user who could travel the world, no one would say that he was passing for someone who could walk. I wish there were some way to communicate to people that part of what we autistics do every day is the equivalent of using a wheelchair on a carpeted floor; it’s work, and the fact that we get to where we’re going doesn’t take away from the fact that it’s a much more labor intensive process than for a typical person. The fact that people don’t see the work involved also means that they don’t see the joy that we feel in the things we do.

    I’d love to find a new word that makes clear the work and the accomplishment involved. We don’t have a lot of good, useful language for disability that isn’t mired in ideas of suffering or overcoming. These words really don’t describe how disabled people live; it’s far more complicated and rich than the words our culture gives us. I suppose that’s why I write about my own experience — to get away from overly simplistic words that don’t convey the realities of my life.

    • “We don’t have a lot of good, useful language for disability that isn’t mired in ideas of suffering or overcoming. These words really don’t describe how disabled people live; it’s far more complicated and rich than the words our culture gives us.”

      So true, and so well said. Thanks for your comment – and your writings in general – Rachel.

  3. Jim Reeve says:

    It’s good to hear that all your hard work and dedication is paying off. It’s tough because we as parents can put in a ton of work, but if our kids show little to no signs of autism, then no one will be able to understand what we’ve been through. Sometimes the greatest rewards are the ones that nobody knows about.

  4. nostromo says:

    Well done A&O it is so satisfying to be in that place when you look back.
    To me it feels somewhat miraculous when my son looks me in the eyes, when this morning I called his name from another room and he came. When I asked him to lie on the floor so I could change his nappy and he did..albeit facing the wrong way and leaning into me, but hey details schmetails :-)

  5. I get this…it is happy and hard at the same time. My daughter’s original diagnosis was high-functioning autism, and now I guess she “passes” for Asperger’s perhaps. I had a school staff tell me recently that she doesn’t even see big language issues with her – this is a person who is totally unfamiliar with her history, by the way, and only recently started working with her. I am on the one hand glad that she is doing so well, and on the other hand bothered that people seem to think she doesn’t need the support that she currently gets. They don’t seem to understand that she is doing so well because she is getting the support she needs…Knowing the full history as I do (every painful inch of it) I can advocate on her behalf, and I think that is becoming one of my most important roles…reminding people of the history so they can understand the present and keep working for her future.

    • I absolutely understand your comment, and it captures so much of what I worry about and need people to know about my son.
      Very well said, thank you for putting those vital points into words.

  6. Julia says:

    With respect, I think that most of what you describe here is the reality experienced by people you would identify as having high-functioning autism. I’m not trying to say your son is HFA (and I don’t find the distinction between HFA/LFA useful or meaningful for precisely this reason,) but I think you’re seriously misrepresenting the reality of “HFA” people.

    “He works extra hard to appear the way that he does to appear apparently “high-functioning”. He works hard to control his anxieties and to express himself meaningfully. He actively works on his social skills too; watching others and trying out what they do and then using our guidance as to whether it is appropriate or not. What might look like high-functioning autism in any other person (for example, someone who is simply being themself), is actually a product of amazing levels of hard work for my son.”

    That is an accurate description of the everyday lives of many people who might be called “high functioning.” But the assumption, clearly stated, is that people who might be identified as HFA….don’t work at it, or aren’t actively trying to pass as having skills or aptitudes they don’t. And that is false. It’s also not something you can ever know unless you are the person in question.

    Kids gain skills. No one is stagnant. Many, many, many adult autistics who now live on their own or use speech or whatever other arbitrary measure is used to indicate “HFA” once self-injured, had trouble with toileting, were violent, or were nonverbal. Many still do. The divisions created here help no one, and don’t reflect reality.

    I’m glad your son has supports that work with him and that have enabled him to gain skills, and I hope he keeps growing and getting support. But he’s not unlike many, many other autistic people, and just as you write that to call your son “HFA” dismisses and devalues all his hard work and will ultimately end up harming him…..the division you’re creating here between “real HFA” and people like your son does the exact same thing.

    • Julia, your comment is almost identical to chavisory’s below, so please read my reply to them.

      When I ran this post past other people they didn’t read into it what you and chivisory have; that message is not in the words I have used, I find it somewhat coincidental that overnight you have both made the exact same error about my piece! I won’t rewrite my post, because it already says what I want it to say, I really don’t think you can read into it what you have.

  7. Zoe says:

    You say your son “passes for high-functioning” but actually isn’t because the truth is, he works so hard to project that appearance. I actually don’t see how that makes him any different from anyone else who’s been labeled “high-functioning.” You’ve just gained some valuable insight into the flaws behind the use of functioning labels.

    As someone who talks about disability rights a lot, I’m often accused of being “too high-functioning to understand” the needs of people who are “actually disabled.” People look at me and think that because I can speak and write and attend college, my disability doesn’t impact my life that much. But these same people bristle when their own kids are called “high-functioning” because they feel that it minimizes the work their kids do.

    I’d like to ask – if you feel that “HF” isn’t a good fit for your son, to whom do you think it can comfortably be applied? What autistic people do you think /aren’t/ working hard to appear that way?

    • Zoe, my gosh, this makes three of you making almost identical comments over a short period of time! Can I assume you’ve all been directed here by a piece somewhere else that has grandly misunderstood me too?

      Please see my reply to chavisory below (and if you like, my reply to Julia above).

      • Zoe says:

        When multiple autistic people show up and start explaining a problem with your post, your response is to assume it’s an “error” or a conspiracy, instead of considering whether our viewpoint might be legitimate? That’s very disheartening.

        Your post clearly states that some people who present like your son don’t work hard to do so, and therefore they should be called “high-functioning” but he should not. I ask again, how do you know that? What makes you think that other autistic people don’t work as hard as your son does to mask our symptoms?

      • Zoe, you continue to misunderstand my post, read it again. I have pointed out your misunderstanding but you insist I don’t mean what I say, that I must mean something else entirely, then attack me for harbouring conspiracies (when I see a huge jump in traffic to an old post, and see 3 identical comments waiting to be approved – and thereby invisible to each other – it’s not a conspiracy, it’s a fair question to ask if you all came from another source, you’d wonder the same). I didn’t say your viewpoint wasn’t legitimate, I pointed out your error in understanding my post, that is not an attack on you or anyone else being autistic, I would point out that other autistic readers have not found your hidden message in my words too – do they not count then?

      • chavisory says:

        I don’t think that I’ve misread your piece; I quoted the precise line to which I object and why.

      • And then you decided to interpret it in a very unusual and unintended way. I chose my sentences and words that go into those sentences carefully. There are times that communication goes awry, and that would appear to be one of those times, and that’s a shame, but I stand by what I say even if you continue to insist that I meant something other than my own words.

  8. chavisory says:

    And all of this is precisely why we’ve got to do away with the “high functioning”/”low functioning” sorting of children and adults…it’s arbitrary, superficial, and doesn’t really tell you anything about a person or how their experience of their place on the spectrum may change throughout their life, what they’ll go through or what they’ll do out of desire or desperation. Life is so, so long, and our learning trajectories are so different from most people’s. There’s still an implication here which I don’t see being seriously undermined, when you say “What might look like high-functioning autism in any other person (for example, someone who is simply being themself), is actually a product of amazing levels of hard work for my son” that those who really are “high-functioning” aren’t working at it. Can we please start seriously undermining that assumption? No autistic person I know hasn’t worked really hard for the quality of life we have.

    I’m thrilled for any measure of peace, comfort, and accomplishment that your son finds in the world. But please don’t use your personal knowledge of his history to prop up an assumption that he worked for it but other people didn’t. We all do. Please use it to realize that however well-off someone else might appear, none of us can ever really know what it took.

  9. rgross7 says:

    Hi Ought- I have read your post and the comments. It seems to me that you are discussing two distinct issues: “passing” and the “HFA/LFA” label.

    On the passing issue, you clearly state that although your son is able in many circumstances to “pass,” he is, of course, still autistic, and needs to work very hard to appear similar to neurotypical people. That seems to me to be the very definition of “passing,” so that clearly makes sense. However, this is also the way most neurotypical people involved with the autism communities see people that they label as “HFA.” Althuogh, to NTs, some “HFAs” can pass and some can’t, anyone who can pass is clearly HFA.

    Of course, this is a part of the reason so many autistic people find the HFA and LFA terms to be such horrible descriptors of anything, as an autistic can be “HF” on tasks A, B and C and LF on tasks D and E.” I personally try to avoid the terms. That said, I still don’t understand how you are drawing a line between passing and “HFA,” as If you are going to use the HF/LF labeling, I can’t see how you can say your son can pass but is not HF.

    Thanks.

    P.S. i should note that the similarities between Zoe’s and my surmanes are not coincidental. : )

    • My post already responds to the point you’re trying to make about the distinction between high-functioning autism, and passing as a high-functioing autistic (hell, that’s the heart of the post!) So I guess all I can do is tell you I’ve already explained the distinction in the post. I can see that some people have struggled to understand my distinction, and I can see that that struggling appears to turn on a denial of the relevance of the high-functioning low-functioning distinction. If this is the case (as it seems to be), I can only yet again point you in the direction of the post where I actually discuss the relevance, importance and function of that distinction: http://autismandoughtisms.wordpress.com/2011/04/30/language-and-autism-the-impact-of-penumbra-and-generalized-instances-on-debates-about-the-existence-of-and-functioning-levels-within-asd/

      I should perhaps make it very clear in light of all these new comments, that I am quite happy to talk about and ponder disagreements with what I’m saying, but there appears to be more than disagreement going on (or should I say “less than”), since I have been misinterpreted as stating and arguing for something which I have tried to make clear both in the posts and comments, that I do not believe.

      • Zoe says:

        Okay, now we’re getting down to it.

        You say that the heart of this post is “the distinction between HFA and passing as HFA.” I guess I’m not clear on what the difference is. What a lot of us are saying is that we also work very hard to do the things that make people think we are “high-functioning.” So what do you think the distinction is? Your post implies that you think the difference is that your son works harder, which is what we objected to. You say that this isn’t what you’re trying to say.

        So what are you trying to say ? What do you believe is “the distinction between being HFA and passing as HFA”?

      • Thank you Zoe, yes that gets to the heart of the confusion, and I appreciate your persistence in this regard! I’ll try to clarify myself:

        I want to make it very clear that I think every autistic person is put in a position where they must grapple with the question and issues around “successes” of passing; indeed I provided the link to Rachel’s excellent piece because I agree with what she says and I think it is said better there than I could have said it myself.

        I do not think my son works harder at this than higher functioning autistic people merely by virtue of where he started out (ie remarkably low functioning, with a largely poor prognosis). I think the effort put in person to person is highly variable and indeed probably impossible to measure. Being able to measure such a thing though is not required in order to appreciate my post, because no point of my post turns on this aspect.

        What I was saying was that the point my son has now reached, is the point at which many people are starting to think of and react to him as if he was high functioning; ie, without taking into account the extremely high levels of hard work he puts in to even appear that way or to have reached this point. To try to clarify this aspect of what I was saying, I tried (apparently un-successfully!) to say that the point that he is at now may look like any high-functioning autistic person who is being completely *themself*. The “themself” refers to not actively trying to pass; I was equating “not passing” with genuineness. I was not at all, even in the slightest, implying that higher functioning autistics don’t have to or do not try as hard as my son. That point was not necessary or relevant to the point I was trying to make!

        Am I getting any closer to being understood yet?

        I really do think we are mostly in agreement here; that this genuinely is a (very frustrating and distracting) breakdown in communication rather than a strong divergence on views about the lives of the high functioning (who I strongly believe are not given the attention and supports they genuinely need, and whose struggles are frequently underestimated and under-appreciated).

  10. chavisory says:

    But what it means or looks like for the so-called high functioning to be being genuinely ourselves is still something that no one can tell by looking. There’s still a huge presumption here about what that means for any given person. We struggle with this constantly. A whole lot of us live our lives never even knowing ourselves. So it’s a total false equivalency to say “this child is working really hard to look like that one does just by being themselves.” Because ARE they, the hypothetical 2nd child? How does anyone ever know that by observation? I grant that some people have things come lots easier than others; I’ve got things easier in many departments than other autistic people, and a few have it easier than me, but my ultimate point is that no one can reliably tell by looking which is which, who really can do more just by being themselves vs. who’s struggling in ways that no outsider to their own mind can even comprehend.

    You’ve discovered that your son works incredibly hard to do what he does and appear the way he does, and that then people treat him accordingly without seeing the struggle or internal state. So, you’ve discovered something incredibly important about the lives of probably most autistic people regardless of how we look on the outside. (Heck, maybe even most *people,* but I’m still a little fuzzy on some key points of how allistic people work.)

    • chavisory, I think the difference between high functioning and low functioning – and what it is to look like either and to have moved from one to the other – is profoundly and undeniably obvious with some people. My son is one of those people. He was violent to others, himself and property, un-toilet-trained until almost 5 years old, largely non-verbal, highly anxious, very withdrawn, extremely limited diet, intense fear of water even touching him, the list goes on. Anyone who meets him now would have no idea of how hard life once was for him in every regard, and how hard he works to maintain what he now projects. The fuzzy line that sometimes appears between high and low was the point of my other post, I believe I adequately discuss it there. As to figuring out how hard someone works to project what they project, as I said in my response to Zoe above, that is neither here nor there for my post, it is not pivotal to the points I am making either about my son nor more generally in the post itself.

  11. Zoe says:

    Okay but here’s the thing.

    Your son used to be perceived as “low-functioning.” Now he’s grown and changed and worked hard and learned skills, and as a result he’s perceived as “high-functioning.” You think that the reason people think this is because he’s acting like a “high-functioning” person naturally would, but it’s not how he naturally acts.

    To my mind, this is the very definition of “high-functioning.” This is all “high-functioning” means, which is why I think it’s not a very useful term.

    But you apparently think that your son isn’t /really/ “high-functioning,” unlike some other people who really are. And apparently, the reason you can tell they’re /really/ HF is that they do the same things that your son does, but these things come naturally to them, unlike your son.

    How do you know which behaviors come naturally? How do you know that people you refer to as “high-functioning” aren’t putting in that effort to pass just like your son is?

    I’m not saying that there’s no difference between the challenges that autistic people have, but I am saying that I don’t like functioning labels, and this is one reason why. As your son grows older, people will treat him as though his past struggles, and his current struggles, don’t matter. They will call him “high-functioning” and insist that his disability isn’t serious and real. I know because I’ve had these experience. Everyone who has ever been called “high-functioning” has had these experiences. So I don’t see a distinction between “passing as HF” and BEING “HF”. What you call “being HF” is nothing but a desperate struggle to appear capable, and often what one gets in return is that people will pretend you haven’t struggled at all.

    • I appreciate what you’re trying to say, but it doesn’t affect my post. My post discusses that he is “passing” not as an NT but as a high-functioning autistic (whatever this may mean to you, the fact is it is used as a meaningful term but a very large number of people in the autism community and industry, and more specifically, that people have started using it to describe my own son, which is what prompted this post). I discuss that this is something both sad in some ways (because he has to work so hard) and deserving of recognition and celebration ( because his hard work is having positive impacts on his sociability, communication, academic acheivements, etc, and I think his hard work needs to be seen and appreciated). All the side discussion about whether it is *ever* useful to use the functioning lables (which, as I keep saying, are not central to this post, and why I use the terms is addressed elsewhere that I have already linked to), does not impact on the key points of this post, particularly when you understand that I am pointing out the terms others are using to describe my son (I personally do not think of or talk of him as high functioning, not yet anyway).

      Regardless, the side discussions about appearances and reality at all times, can be dealt with quite easily I think, if you think in terms of the difference someone projects in their home enviornment at thier most relaxed, versus out in society where they are interacting, conforming, etc. Or if you prefer, what they are capable of at all times without effort, versus what they are only capable of with extreme concentration and effort. I do not think this is an impossible or meaningless distinction as you seem to hold. At the least, I see and know the differnce in my own child every single day.

  12. nostromo says:

    The discussion highlights the problem with the language around Autism. When even the base word is now ambiguous and can encompass multiple functional disabilities that may or may not be present and to any degree..its not suprising I suppose. Not that I have a solution to this problem.

  13. Just a note to people trying to comment on this post: I won’t be allowing any further comments through because of the sheer number of people who have decided this post is an appropriate forum to attack my son and to personally attack and threaten myself, and in general to attack autistic people. I’m enforcing my comment policy: http://autismandoughtisms.wordpress.com/comment-policy/

    My apologies to those who had genuine and thoughtful comments and responses to make.

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