About my “About”

In the wake of my quiet little blog seeing a surge of traffic on a post that had already lived the lifespan of most in my blog up until then – two days tops – a lot of things came up that I thought I would be addressing.

There were the obvious ones arising from various comments in places where it was re-blogged and here. Was Voldemort speaks really still so bad? Can a parent cry about there child and still be accepting of their autism? Is support in any form preferable to no support and so on.

Then there were the issues of feeling a sense of responsibility I didn’t feel when only a few people who would read anything I wrote read my blog. Sure the occasional person stumbled in off the wilds of the internet and some pretty bizarre search terms but for the most part it was quiet. The people who came didn’t comment much which in a way made it quieter as I have a lot of problems generating ideas of what to write about next.

Suddenly there was too much to say though. I was grateful to those who made a point of saying how I had influenced their opinion or even where something I had said had helped their child in some specific way. I was humbled that the blogger at :   parentingandstuff.wordpress.com would go from such such a pro Voldemort Speaks position to almost instantly say they had been wrong. It takes courage to say when you are wrong on the internet when everything is forever. Courage to resist the temptation to quietly erase the signs of thoughts you had articulated but have already rethought.

So an avalanche of re-blogs and ping-backs happened. So many that today I saw on some blogs that some of my earlier followers were being made aware of my blog.

I wanted to warn people that not only am I not the consistent of bloggers but that very process of writing that one person referred to as like a freight train doesn’t always result in a piece that can be posted. For the most part something captures my attention. I write until I am done and I am not always done in an orderly manner at all. As often that train like process builds momentum but then goes off on several sidings and a dozen half bogs are born until I save them and surrender for the time being.

Since I have enormous respect for people who say they are wrong right in their blogs. I will get my own out of the way. I was wrong about how my comment would be received that triggered the influx of traffic here. I was afraid it wouldn’t even make it out of moderation and had already sought back up from someone in the “parent camp” to try and make the point I was pretty sure I had failed to.

I backed up my comment as I posted it not really expecting it to escape moderation. I was completely wrong about that and in the process of being completely wrong about that something else came up that someone felt I was completely wrong about.

Someone expressed that they were highly offended that my “about” says I am an adult with autism. That alone apparently making me not worth reading I guess. I had committed a grievous sin of separationist language.  Like any community the autistic one has norms.

For those new to the politics of autism seperationist language is undesirble for the most part because it reinforces the notion that there is a person seperate from their autism and all the things I truly do loathe like the notion one can love a person but hate their autism and so on. I think I have made it pretty clear in everything I write that this is not a position I hold. Still there is a norm and I strayed from it.

Long ago many of us had to stand up for the right to call ourselves autistic versus person with autism. I am old enough to have been there when autistic culture was truly in it’s infancy. When each of us was fighting that sort of battle in whatever other arenas we ventured into – the options being much different then they tended to be limited to IRC channels, mailing lists, and newsgroups and of course real life.

Everything I have ever written about my autism is true to the ideology about why you don’t separate out autism from your being. I’ve always been quite clear that there is no non-autistic me. That the very nature of a pervasive, neurologically based, development disorder makes this impossible. It also means should that magic cure ever appear it would not be possible without curing me of being me. I don’t believe such a thing to be possible and as the price is my personhood I wouldn’t accept it. That too I have made clear I thought. The closest I ever came to being banned from an open autism group was when I objected to the notion I would be perfect in heaven, perfect being not autistic. I was genuinely distressed at the very notion and being younger while generally Jewish views on reserection are a bit sparse couldn’t reconcile that with being as G-d intended me to be. I did manage to get myself banned from a group for females on the spectrum for being too low functioning but that’s another story.

The choice in my about is largely stylistic. It’s quite similar to my IRC bio and contains a string of withs that it is simply awkward to make into a grammatically sensible, smooth flowing piece without them all being withs. Since people who interact with me know how firm I am on the topic and that I refer to myself as autistic and to my fellow autistics far more often than any other phrasing it wasn’t a choice based on ideology at all.

Had it been based on anything other then the smooth flow to be honest I may still have chosen to put it that way. If the aim is to communicate in a way that builds bridges of understanding knowing that the majority of people have been normed to regard non-person first language as wrong and certainly having had to defend myself thousands of times for the non politically correct choice I may still have chosen to go with the wording I have. It wasn’t a conscience choice but knowing that the people who need reaching with my version of what it is to be autistic are not by and large my autistic peers or their friends but those firmly in the clutches of an autistic narrative spun by Voldemort Speaks and other tragedy model organizations I may have chosen it to extend a gentle hand. To not have to be in your face immediately before someone even considers reading anything.

How we phrase things does indeed influence thought but back when autistics were first getting the chance to come together as a global group and the sort of forming, storming and norming that all groups go through would happen this day seemed far away.

So used to having to defend the choice of autistic over person first language, so used to having to reel off the whole long ideology the day when someone might be highly offended at first glance and never really reference the thoughts behind it seemed like it would never come and now that it has like any ideologically mandated limit on how I express myself I am not sure it is a good thing.

The extremism of their being a single right way to portray a reality is no better coming from within than from without. Just as being kicked from a list of people on the spectrum based on people’s mistaken notions of what it means to have been diagnosed with autism not Asperger’s and thus too low functioning isn’t really more palatable  than being thrown off a largely parent driven list. (Again for those newish to autism an exclusion criteria for a diagnosis of Asperger’s is of course a pre-existing diagnosis of autism. Asperger’s was not in the book when I was a kid and well it’s in it’s last month of being in the book now. While it was in the book there was a subset who chose to define it as the best kind of autism to have or the mildest when there is nothing in the definition to suggest that concretely.)

To think I must always phrase things a certain way and any deviation from that expression will not be tolerated well at first I had a sort of “whippersnapper” reaction.

That is being old enough to actually have had to sign and have a loyalty oath administered to see the internet in it’s military only form, having been there near the dawn of autistic culture and part of the group who was articulating these ideas to one another on a global scale for the first time ever I wanted to just dismiss the objection as being from some young lad who didn’t even have to fight that fight to the degree the older part of the adult community did.

I was prepared to take offence. To challenge his right to object. Even to sink so low as to enumerate the many ways the contents of his own blog offended me but when I calmed down I realized that what I was seeing was in some ways a coming to fruition of a hope I had articulated when all that was first starting. That computer and the internet would help people with autism so that the next generation would come to things from an increasing position of strength.

I sometimes read what I thought about computers and the enhanced ability to communicate both within the community and without and think I was overly optimistic. But looked at as something other than a criticism levelled at me by someone who neither knows me, nor read enough of my writing to know how clear I am on the underlying point, this was a person who was so strong in his conviction that autistic was preferable he didn’t have to defend that with the paragraph upon paragraphs that used to be necessary. So while I don’t agree that I don’t have the right to some variation in how I describe myself, or that variation is never desirable even the certainty from which he launched his attack is a big part of what we hoped for for those who came after us.

I’m not a fan of compliance though. Or blind compliance and I think a call to obedience about a semantic point that is as limiting as saying one must always use person-first language, while admiring the self-confidence which with the position was forth I reject it. Once a community hits the point that blind adherence to norms is expected some re-examination of the norms is in order. Being stubborn and not someone who complies for compliance sake I am obviously not going to be embraced by those of my peers this is important for. I say that knowing precisely why it is important but think the message is critical and strong enough to stand up to the very occasional variation.

If I refer to myself as autistic the vast majority of time. If I spend hours and hours of my life articulating the reason why person first language makes no sense for a pervasive development disorder I am not willing to go so far as to say I never have any choice at all. That’s an extremism that I reject.

When it isn’t an ideological choice at all but simply a stylistic one chosen for the flow of the words then I will not have the same right to make a wording choice that every other writer has stripped from me. I am not prepared to think having chosen expressions other than autistic for how I describe myself makes me a bad self-advocate.

In a month that we hope to make about awareness while a restatement of the ideology behind the objection is awareness I find the notion that as a result of that there can be only one right way to say something worth rejecting.

Not because I don’t 100 percent believe in the framework that goes into the choice of autistic over person with autism. There are those who believe that any slide into person first language is just that – a slide. That it undermines the foundation that was so painstakingly laid. I’m not one of those. While I know how much language shapes thought, t o have so little faith in those who read as to think that an occasional deviation from the prescribed norm in referring to myself will cause it all to collapse is to have about as much faith as when I made a copy of my comment on the blog in the first place.

Maybe despite never being the compliant type Passover has me even less so. We didn’t fight this fight for so many years to then have it turned into something that is in an oppressive force. I don’t feel I can communicate any sort of message without the same self-referential freedom others have. I joked on Monday when a friend was feeling a strong sense of all the things that were going “wrong” with what was quite a wonderful Seder that we were not going to celebrate our exodus from slavery by being enslaved by the ritual. Nor can we celebrate neuro-diversity from a position where there is only one right way to express that message.

I know the people who feel so much rests on semantics feel that very strongly but I feel as strongly that the entire message is what matters. In a message that has been consistent about there not being a non autistic person separate from myself I will use variations when they are useful or are the least clunky way to express something.

It takes courage to put your words and ideas into the world. While not being brave on many fronts at this particular point in my life and while not being especially trusting about a lot of things I feel like I can trust that the wording of my about will not dilute my overall message. I’m choosing to think as I say that the strength and confidence with which how wrong I was was expressed is actually what we hoped for but with a hint of caution about what an over-zealous notion of the right way to say something could do.

We are all, each of us, different. We bring to any endeavour be it autism awareness or writing or raising a family unique perspectives. Meaningful awareness requires dialogue. Dialogue isn’t possible when norms are rigidly enforced.

In the blogsphere the value of the dialogue is often that opposite viewpoint meet. Sometimes your viewpoint may wind up being seen as winning a swift battle but that’s hardly ever the case. More often for it to be valuable at all you have to take in the other side and then it can have many possible impacts.

Ariane Zurcher who was the one who got me to ever open up my own blog again by her own courageous demonstration over and over of mistakes made, opinions changed often managed to welcome people on her blog who are still very much at that earlier, non-accepting stage of autism. Who still want the cure. Who are blind to all but the autism and the desire for it to be gone. The process of movement from that view point to acceptance is nearly always slow.

I mentioned in a comment how part of what makes me write is based on a comment from an English teacher I had about the meaning and beauty of turning pain into words and sharing them. For me, the fullest meaning will come if I can have the kind of impact that moves some people from a position of pure blind terror, and sadness about autism to acceptance. I don’t think that can be done by toeing a firm semantic line at all times.

There are extremes expressed about autism. I find the extremes don’t ring very true for me. While my autism is not a tragedy it’s not exactly all a fantastic day at the amusement park either. I accept my autism but actual acceptance doesn’t come in not recognizing the challenges and sticking to an equally as scripted message about how much better it is to be autistic and insistence on the using the same words for that message.

My own autistic life is very hard more often than not. My autism is the best and worst thing about me. That’s my truth. Other people no doubt have a different truth. When I said at the outset one of the things that came up was noticing in the desire to be accepting some parents expressed guilt for when they cried. Don’t.

Actual acceptance to me looks like being able to say, “You know what this is very hard at times, it’s exhausting and I get worn out.” That could be said of life too but within this context being afraid to express perfectly natural things lest they be thought of anti-acceptance worries me.

If I say I cry for myself often will I be driven from the adult autistic community? Probably from the more militant parts. I write this at close to an adult all time low in my ability to function at all though. So while I know deep inside myself there will be a day when I can appreciate the gifts my autism gives me, more than worry about the needed for life capacities failing and adequate support not being there today isn’t that day.

If I say sometimes my autism scares me does that actually work against acceptance or does that free someone else up to say or to admit that it has that effect on them sometimes too? What I want at the end of the day is to be able to say sensory issues so severe combined with executive dysfunction being at an all time high mean I have lost close to half my body weight without someone thinking that makes my existence so miserable and null of meaning that not existing would be preferable. As long as I exist the potential for something meaningful to be derived from my experience exists.

On the whole I like the person I am. I have many strengths and I have needed them. While I accept my autism and am not ashamed of it, the kind of acceptance and understanding I would hope society can get to would have them look at my struggles, and not think of me as in need of a cure, or future expressions of what it is to be  me as in need of prevention but to think wow as a society we could really do better here. We could provide the supports so a person like myself can pursue a healthy and meaningful life. We could choose to spend just a fraction of the funds derived from the dreaded awareness accessories not on making more videos with sad music playing to raise more funds in a never ending cycle but to say that as a society we value people with autism enough to give them the means to live the best life they can.

Right now we are doing badly enough that the conversation keeps coming back to institutional models of care. We are doing this badly because every single time we had appropriate supports in place they were removed without anything equally as appropriate replacing them. Real awareness would be as concerned for the 44 year old autistic experiencing sensory issues so severe they are often starving as for the 4 year old. Autistic people spend the majority of their lives as adults. However you spend your April try to put the notion of autism as a lifespan issue on the agenda.

I have a dog, a computer, dreams of more schooling and my access to all of those things could be in jeopardy not because the supports that would see me making forward progress again don’t exist but because the system which is a reflection of the society that creates it will default to what is easy for it. I’ve spent the majority of my adult life on the sidelines despite having abilities that could have had me as a more active partner in my society. For much of that time I would have required a very minimum of consistent support. Had that support been available when you go from being a child to an adult it’s fairly probable I would be in a position to pay for that support myself now. So, yes, it sucks to have come around in the circle for the umpteenth time to a position where the kind of care that would strip all meaning from my life is all that is on offer. I don’t think that’s good enough. I also don’t think I caused it by referring to myself as an adult with autism in my about. Societal indifference to people like me that has us forever poor and dependent is obviously not going to change over night. It wasn’t created by the occasional deviation from preferred terms and it won’t be overcome by a strident insistence on a sameness in the message we have about autism. Every person is unique. If I choose to have a larger linguistic toolbox at hand to try to make my own case about my autism that’s my choice to make.

It’s not a battle I am exactly fighting from a position of strength at the moment. At any moment the sum total of things I cannot manage for myself could take all choice away. So yes I am tired, not of my autism but of values that essentially discard me. Of an unwillingness of people to even imagine meaningful inclusion instead of token inclusion. Living with autism can be hard but is hoping that raising awareness means one day it isn’t made harder than it needs to be asking too much?

Cry when you need to, laugh when you can. Don’t let anyone limit how you frame your own reality. Change is slow. So slow the things that will help me will likely not be achieved in my lifetime. I’m in this fight largely for those who come after even if some of those who come after rise up and bite me for my choice of words.

I have to celebrate when I learn that something I said made an actual difference to someone with autism because there is little to celebrate in my own reality right now. As long as the ways I phrase things are not a barrier to making that difference I will not change it.

While I worry when I get real about my own life it probably scares the beep out of the parent readers that isn’t the intent. The intent is to show unless we can make progress that has society view autism as the lifespan issue it is this reality I am living could be some child’s future reality.

Don’t think I am devaluing myself when I say I am in this fight largely for those who come after. I say it that because what sustains me is the knowledge that my experience even at rock bottom is indeed helpful to someone. It gives me courage and vast quantities of it are needed. While some well meaning individuals will bestow courage as an attribute on those they see as “afflicted” the reality is I am always running out.

At the end of the day everyone lives the life they were dealt. If it seems like the cards are stacked high against winning since there are no re-deals in life well you find a way to go on. My way to go on is not to blame my autism even when the areas that are falling apart are all pretty autism related. It’s to point out if one were to look only at how I was functioning independent of my ever having spoken, or having made the mistake of letting them get some estimate of my intelligence – based only on where my functioning sits right now a just approach to autism, a truly awareness based approach support would be basic.

Instead I get institutional care suggested or going off to have my family look after me and blank stares if I say my family has their own life and I have had one here in this city for 27 years so I would prefer to carry on with my life, with my goals and with my dreams. However grim the basics look I know the only sustenance that helps is dreams.

When I was young and energetic and a life closer to what I hoped still seemed within grasp I had energy to spare. I still have hopes though. The life I will have is something I keep having to re-envision as some things I dreamt of move permanently out of range but as I play out the life I have I do so hoping that over times more dreams of autistics are realized. That a strength based model will replace a tragedy one and that one day there won’t be more mes not because autism has been eradicated but because autistics are supported and encouraged to have full and rich lives. Not just managed, or warehoused , or set beside the path of life. That one day continuous access to appropriate supports will be a battle won and no one ever has to sit with the choice of dying slowly or giving up their dreams. It seems a modest enough dream. Society seems to have a different opinion. Until I am no longer or that dream is realized I will try to express whatever I think needs expressing to move that forward and to serve the greater good. I don’t think that as a life choice that’s much different from any other ethical being. Because my life is very much at stake whether literally or as the kind of life worth having, I will be obstinate about any attempt to dictate the words I must use. Everyone can feel free to be just as obstinate in their own word choice. Words are power and part of the power rests in a choice. If 44 years of autistic life hasn’t earned me the right to switch things up a bit when describing my own reality well that’s a tyranny of ideology I won’t submit to. It’s possible to believe in an idea but reject the imposition of it.

In theory I believe democracy is the right choice for some countries for example. I find the notion of imposing democracy to be somewhat counter to that very ideal just as I find the imposing of a single way to describe autism to be contrary to the whole point of describing it. To my younger, autistic brethren who can feel such offence reflexively by my description of myself well that’s a debate I was part of. That’s an ideology I live not by seeking out reasons to take offense based on small deviations from the semantic cultural norm but by trying to reach out. Because meaningful change to autistic reality can only happen in partnership with the neurotypical majority that is going to mean sometimes singing to the most reluctant melodies of change in terms they can accept. That is not like I said at the outset why my about is phrased as it is but sometimes it will be a deliberate choice for that very reason.

Let’s not be so focussed on the need to manage the message that we too become a force of oppresion. The reason you hold a position can only be strengthened by challenges to it so if my errant ways in my “about” made someone more sure of why autistic is the preferred term then that’s good I think. Certainty that it is the preferred term though just expressed in the same uniform way and the same accusatory phrases as always in the absence of the kind of arguments that were needed to advance the cause do make me worry that there are those who will seek to have people toe a linguistic line without fully understanding why. I am not saying that was even the case with the person who objected here as it’s the second time this year I’ve been challenged from within the community over deviation from semnatic norms. Being autistic doesn’t make us Borg – although that would be cool in a twisted kind of way. There is room to challenge each other without undermining each other. To celebrate diversity by being diverse.

So one of these days I will get to the other things this whole experience brought up. The questions that spoke to me more. I didn’t want to tackle those things though only to be handed an infraction card for the way I write about those things.

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24 thoughts on “About my “About”

  1. It seems bizarre to me that anyone would consider autism to be a “curable” “disease”, but I guess I’ve just thought about it more than they have.

    I don’t handle pressure well myself and thus I write when and how I feel inspired to do so. You sound like you are beset by people who have some kind of compulsion to control others. These people need to find some nice projects they can obsess on that aren’t other people.

    Obsession can be wonderful if properly targeted. Preferably not in my direction ; )

    I hope you keep writing (when you feel like it). You’re interesting.

    • Not exactly beset thankfully and the older I get the more stubborn I get so since controlling me was something my parents claim to have given up on as soon as I could walk it’s more a good luck to them sort of thing. It is an important concept in autistic culture but not toeing the line is also a key concept so…

      • As soon as I posted that I realized I should clarify…I don’t have a problem with obsession, just obsession that is about trying to control people. I can be really obsessive. And stubborn too. But I don’t try to direct other people’s paths.

        I see autism as a spectrum of qualities that may be innate, may be developmental. Doesn’t really matter in some ways.

        A correspondent gave me an image once of the human spectrum: imagine a sphere with a whole bunch of people in the middle, and then more scattered further and further out in different directions. The people in the middle all more or less make sense to each other, while those of us further out make less sense to them, and we are also likely to be even more different from each other. But what we do have in common is being outliers.

        I’m also kind of shy of labels, because labeling a person is the first step towards trying to control the person. But in my reading about autism, I see myself to some extent, so I keep coming back to it.

        • It’s true enough about outliers. As for labels they serve a purpose and are not always avoidable. The trick I suppose is how you feel about the ones they try to stick to you and if one describes your reality well enough it can’t be shed what you do about ensuring perception of that label fits with experience.

          I notced one of your tiny posts you describe yourself as a hermit and I often describe myself as that. I also shock the socks of some people if I say I am a spinster as they see it as negative but I see it as much like any label in only holding the power to be negative if you allow it to.

          • Yup hermit spinster here too. Far as humans go I haven’t given up on them but Einstein did say that thing about doing the same thing over and over again and expecting different results.

            I’ve never seen “spinster” as being pejorative. Just quaint.

            I write short posts because I’ve had trouble staying focussed. I figure it’s my way of staying in the game. Also I am totally a creature of habit and I think maybe I can develop new habits better if I don’t keep the bar too high. Once I get involved in things it can be difficult to stop. But I see the Internet as non-linear mostly. This is how I deal with humans these days. In many ways, though surely not all, it works much, much better than in-person contact. It’s much easier to suddenly leave without being perceived as horribly rude, as an example. In person it’s much more difficult to say “I’m suddenly feeling too overwhelmed and I really have to go somewhere else.” Kind of hard on a lunch date.

          • Actually when pondering the utility of labels having some leeway to terminate interaction when it is too much (or no choice in the matter) would be a useful byproduct of being autistic. It doesn’t work well with some subcategories of people though (emergency mental health types being even less understanding than lunch dates if you hang up on them… ) Still when people ask if there is any point being diagnosed in adulthood if you weren’t as a child that sort of thing can actually be part of the point. Not so much getting permission from others but granting yourself permission to be who you are.

  2. About your writing style…is that what got you kicked off a “high-functioning” group? Because the Internet is all about writing.

    There is absolutely nothing wrong with your writing style. It can’t easily be rushed through (horrors!) but it is clear and coherent and germane.

    People who write on the Internet are often in way too big of a hurry and will overlook writing that doesn’t read the way they are used to reading. That’s unfortunate but unavoidable. But to get kicked off a blog for your writing style thusly? That’s shameful behavior on their part. People who identify as Aspie? They did that to you? Lame.

    • Nah it was an email list years ago when the AS diagnosis was new and the people new to it really did hold all the misconceptions about autism that you would hope they wouldn’t. So when I said I had been diagnosed as a child that to them meant I had to be so classical I had nothing in common with them. I was actually okay with it in a way as I don’t really find I have much in common with those who self idenity as “aspie” . Or with that many females on the spectrum either. A handful but not so many that being thrown out left a gaping hole in my life. It seems a bit funny now in retrospect.

    • Excellent points. I’m more into self-diagnosing, though. Picking labels that work for me. I’ve been circling around autism for quite some time now. Of course, I then have the responsibility to work to help publicly define the label.

      Temple Grandin changed my head about this quite a bit. I don’t think in pictures, but I do identify with non-humans a lot. And though I don’t think in pictures, I was enormously delighted to be introduced to the idea of thinking in pictures, so I could think about what that might be like, having this brain library of images that one used primarily as language.

      • I don’t think in pictures either. Temple Grandin’s notion that all autistics do (which she did eventually retract but not before it had shaped what people thought) is actually an example of a failure to imagine that others think in ways different from yourself. As a community even if it didn’t apply and it bugged the heck out of us we had to ultimately say it was an error we were familiar with.

  3. I am not autistic but I can find more empathy and understanding my thought process blogging process and manner of beliefs, closer to you than I can with some of my closer friends. I have to thank you for tat. I also admire your intelligence. For, on my best days I couldn’t out a piece of writing so well tied together such as this…..I find comfort in your blog. Understanding. Amazement. Thank you. You are perfectly well spoken and your beliefs are well articulated better than ways I could convey my own. I am so grateful I found your blog. It has also helped me with my own children. Just a big thank you!

  4. Just want to say what you already are well aware of – I think you’re pretty fabulous and am profoundly grateful to you, but I figure none of us can really hear that sort of thing enough. You do and have and continue to make a difference to me, to my family and to the way I think about autism.

    Is it okay if I quote this (?) – “the kind of acceptance and understanding I would hope society can get to would have them look at my struggles, and not think of me as in need of a cure, or future expressions of what it is to me as in need of prevention but to think wow as a society we could really do better here. We could provide the supports so a person like myself can pursue a healthy and meaningful life. We could choose to spend just a fraction of the funds derived from the dreaded awareness accessories not on making more videos with sad music playing to raise more funds in a never ending cycle but to say that as a society we value people with autism enough to give them the means to live the best life they can.”

    “So yes I am tired, not of my autism but of values that essentially discard me.”

    I am doing a webinar Monday, (tomorrow) at 4PM on “Parenting Toward Acceptance” and would love to use your words. Tell me if it’s okay, or DM me.

    💚

  5. gareeth, I am drawn to truth and your posts sparkle with it.

    My simple rule about people getting offended: those who are easily offended can go away. True in real life, true, and especially easy in the blogosphere. If I offend, and the person speaks up, I apologize. I may not recant, however.

    I’m always willing to listen and learn, and it’s easy to admit I’m wrong, because I’ve learned that I learn faster that way. However, if it’s something I feel strongly about then I give them a nod and a smile, thank them for their opinion, and go do what I wanted to anyway. It is not worth my energy to disagree with them, or feel hurt that someone felt that way.

    “How we phrase things does indeed influence thought” Semantics DO matter, the words we choose are very specific. I’ve been playing with this very thought, though I’m a noob to the world of autism, I have a background in linguistics.

    Right now, I’m not trying to define my son as autistic, or ‘my son, who has autism’. He gets to decide that for himself. My focus is on my son, who is still the same kid as he was before a doctor put a label on him so we can make the insurance pay for therapy, who happens to have some of the characteristics that are labelled as autistic. It’s round-about, but while labels are useful to categorize and research, I refuse to believe that people are labels.

    There is more to him than being autistic. He acts like me, it makes me wonder, would the doctors call me autistic? My whole family, the one I was born to and grew up with, is different and weird. At this point, I’ve pretty well embraced the weirdnesses.

    I have to say that I prefer autistic over ‘person with autism’. But offended by your word choice? Why? I think you have the right to define yourself as you choose in the moment. And moments are
    changing all the time.

    Know that it’s okay if you don’t write all the time. Life happens. Sometimes writing is therapeutic, sometimes it’s impossible. I’ve been known to abandon blogs and disappear from the net for months at a time. I hope my readers forgive me. There is a responsibility, but only as much of it as you choose to take on in a given moment.

    At some point, when it’s not easter morning, I’ll come back and finish because I’ve been pulling out all the sparkly quotes from this post. Oh my, thank you for writing what you have.

  6. Gareeth, thank you. Your words are elegant and powerful in so many ways. Please continue sharing your insights and experiences, since they are so necessary to those of us who wish to encourage others to also embrace the neurodiversity for which you argue so eloquently.

  7. When my son was diagnosed with extremely high functioning autism at the age of seven, I did not want to accept it. That was 18 years ago. I said to the child psychiatrist, “Maybe he has Asperger’s syndrome.” He said to me that this was not something that I would want for him. He had trained with Dr. Luke Tsai at the University of Michigan in the Asperger’s clinic, and he knew the difference between the two. My older daughter was diagnosed with PDD.NOS, which I did not realize was on the spectrum. I kept wondering why they treated her as autistic, but I did know that she was more disabled that my son.

    I have not been very involved with the autistic groups, in part because I didn’t feel accepted. There was a lot of pressure to buy into the latest therapies (some of which have now been proven not to work), and I could barely afford any of it for one child….and which child would I choose? So we went our own way. I went to conferences and workshops, and I learned a lot. Sometimes people would suggest to me that my older daughter had Asperger’s because of certain characteristics of same. But I would come back with, “She was below the 1st percentile for speech development through middle school.” I think there is some fluidity in these diagnoses. Now the diagnosis will diagnostically disappear, as you say.

    I have been busy since 2005 taking my children back and forth to local colleges. My son did not learn to drive until he was 22. My older daughter may never learn to drive due to some comorbid conditions due to lack of oxygen at birth. At any rate, the local rehabilitation driver’s program says she cannot drive. So I have not been involved in the autism community for several years due in part to time constraints. Now that two of my kids have graduated from 4 year colleges, I may get involved again with adult groups in the area for the sake of my older daughter. I have more time.

    I do think that you are extremely high functioning. No one could write the way you do and not be extremely high functioning.

  8. It has also been suggested to me by my psychiatrist that I have some autistic traits, which I believe made it easier for me to understand my children. I am writing a blog regarding my children, what we went through, and the current efforts in transitioning to independence. It is okay and necessary for parents to feel a certain amount of grief when they receive the diagnosis, even if those on the spectrum are deeply offended by it. Your post has reminded me of some incidents that occurred during the journey, which will go in a future post of my own.

    I have dry periods of time when I don’t write much either. And then I write a lot for a while. I think it is normal in the life of a writer, which you also are.

    • The thing about functioining as a concept I don’t believe in it. I write the way I do because my intelligence was beyond their ability to measure and having had good teachers. Intelligence and writing skills though don’t say anything at all about my ability to navigate every day life. When I say I am not functioning high by actual measures of my autism that’s what I mean. My speech is very prone to flee right now, I don’t shift attention, I forget to eat, am easily overwhelmed and spend way too much time avoiding meltdowns all together.

      I don’t deny my intelligence just the policy that denies autistic people who are intelligent the support they need to manage all those other pesky things that I currnetly don’t manage. Those are things that only support will help with.

      • Point taken, as they say. I understand what you are saying. My son had speech therapy through his senior year of high school…but it wasn’t because he couldn’t talk. It was pragmatics; the functioning. Just as my daughter cannot really take care of herself yet, even though she is 27.

  9. Oh Gareeth, I feel terrible that you have to deal with people that question your choice to refer to yourself by a title that is part of who you are. Is it the most important or vital? Probably not. But it is a label that is correct. You have autism. By saying that, I don’t feel, personally, that you are separating yourself but explaining a facet of who you are. I saw some of that particular ideal from someone that reblogged your original post. They were admonishing a non autistic blogger for referring to you as an autistic. Even someone such as myself was surprised by this as I had no idea that identifying yourself as autistic was considered a “no no” in the more militant circles. Live and learn.

    Though in my humble persona opinion, the fact that you stand up and say who you are and take the time to educate people like myself about something that we can only scratch the surface on in research is commendable. It is, as you so eloquently put, standing up and taking mistakes that were made in your childhood and opening the lines of communication open so that they are not made in future generations. It is hard for me to see how you are changing the world or making a difference if you refuse to even identify yourself as autistic. Maybe that is just me. I grew up with ADHD. If I was going to say that I wanted to be a part of changing how kids with ADHD were viewed, I couldn’t do that if I wasn’t willing to state my place in the community. I think you are brave to be who you are even when you are misunderstood by nonautistics and considered “too open” by Autistics. Brave and open. Thank you.

    You are an inspiration, dear, and thank you for just being you.

    • I identify as autistic 99.8 percent of the time (although actually counting the incidences of with or similar language would be both boring and a waste of time) That’s large part of the reason being challenged on it bothered me (and being in the generation that had to defend the word choice of autistic constanly0

      You can’t make everyone happy. For the most part I don’t engage with the more militant types (although historical ties to some make me be able to see past some of the in your faceness) I see cooperation as vital and thankfully at 44 I get way less rattled by attacks from either side and being prone to excessive moderateness apparently we don’t get many so it’s all okay.

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