This article is part of the T-21 Blog Hop. Although the name is reflective of Down syndrome, this hop is open to all blogs in the disability and special needs communities. Self-advocates, allies, parent advocates, all are welcome. Posts should be about advocacy or activism.
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Click here to enter your link and view all the participating blogs.In my entire road towards an autism diagnosis, it seemed a bit strange that I’d only talked to autistic bloggers, through blog posts and comments and email. On top of that, the majority of those bloggers came from the US, the UK, and Australia. Aspie Story and Blogging Astrid were the only fellow Dutchies I’d found so far. I still hadn’t met a single autistic adult in person.
So when my psychiatrist offered me the chance to participate in a series of group sessions for autistic adults to learn more about autism, I thought that would be a pretty good idea. Even though the session subjects seemed to cover a lot of ground that I was already familiar with, I was looking forward to meeting other Dutch people on the spectrum.
The group consisted of me and three other women. I won’t go into details to respect their privacy, but what really stood out for me was the reaction when I told the group about my own experiences in coming to terms with autism, about wanting to be autistic because it was the only thing that felt like all my experiences finally made some sense. About redirecting my energy and efforts towards things that would help me cope, instead of things that would make me appear normal. Allowing myself to be more visibly autistic.
At those last words, the entire group gasped in shock.
I’m not joking. I was the only one there who thought it wasn’t actually all that bad to be stimming in public.
Throughout the session, that impression was reinforced over and over. People were asking “If I don’t do things like that, then maybe I’m not actually autistic?” Looking for things that would prove they weren’t doomed for the rest of their lives. Looking for hope that maybe some day they could be fixed and be normal. Only seeing the negatives. I felt like I was the only one emphasising the good bits, the strengths, the FUN aspect of autism, the connection with other autistic adults, the recognition and acceptance that comes from finally belonging somewhere.
It was heartbreaking. It was exhausting.
So naturally, I decided to attend another networking group for autistic adults in the evening.
Yeah. That bit where I talked about learning how to redirect my energy and efforts to cope? I was lying. I’m used to a lifetime of pushing myself to do things. To push through the exhaustion. So of course it made sense to go to the evening gathering as well. Because autistic people, right? I can be myself there, right?
Wrong.
There was a pub quiz. People told me, like they always do at pub quizzes, “How do you know all that stuff?”, with the that-is-SO-not-normal look in their eyes that I recognise so well. I had my Tangle with me and people asked why I was constantly fiddling with it. People made remarks about how nice it was that this evening was just for high-functioning people and then looked at me and noticed me rocking. Unapologetically. Smiling. And I could see them judge me. Rocking is for Rain Man types.
In a gathering of autistic people who all tried to outdo each other in how high functioning they were, I talked about going non-verbal, and how emotions often feel overwhelming, and how hard it is to take good care of myself by eating on time and keeping my house clean. I made them laugh and nod in recognition. I talked about the energy and frustration it costs to pass for non-autistic, and why. I talked about not passing even when I try so hard. I talked about all the things that I read on all the blogs I’d been reading since the start of my diagnosis.
And in the middle of a discussion about high functioning and low functioning labels, and how maybe we should look at what a person is actually capable of, one of them said to me that maybe I needed a time-out to calm down, because I was rocking back and forth so much. And when I said I was just focusing on the conversation, and not feeling anxious at all, he didn’t believe me.
I still can’t truly come to terms with the fact that this happened. It happened. In a group of autistic people. It was just so entirely different from the autistic community I had experienced so far. The online blogging community. The community I’d taken to be… well, NORMAL. With their acceptance. The explanations that made so much sense. The empathy.
What I’d taken to be normal for being among our own.
In reality, the blogging community – that I accidentally stumbled upon when researching ways to get diagnosed as an adult – was completely different from the real life community that I’d hoped to find. And it made me realise. My ENTIRE perception of autism as something that is intrinsically part of me, with the good and the bad, the meltdowns and the laughter, has been shaped by autistic adults who write from a place of acceptance.
What a difference that makes.
Acceptance has made me different.
...autisticook 
Thank you for alerting me; I think I’m on the same road as you, though not as far along. Will steer clear of formal groups because I think I’d run into the exact same problems. (And where in the Netherlands are you and could we meet IRL? I’m in Deventer)
It’s not altogether bad because most of the people do listen to what I have to say. It’s just that my outlook is so radically different. In the cases where there is positivism, it’s often couched in “Aspie supremacy” terms. It means that I’m spending more time being an autistic activist than relaxing and simply being autistic among other autistics.
I’d be willing to discuss the rest through email, can I use the email you’ve used to comment with?
Sure; Dutch or English as you prefer, I’m completely bilingual.
Why do people fight themselves so much. Once we accept our uniqueness (limitations, talents and everything in between), we can excel. We can put our energies into good things rather than trying to pretend we are something that we are not. Acceptance is liberating.
Being yourself is frightening, especially when you feel you’ve been punished for being yourself your entire life. But I do think that if we can’t accept ourselves, trying to get the outside world to accept us is hopeless.
This made me smile. Thank you 🙂
I realised very early on that, like everyone else – NTs to each other, no two autisms are the same. Mine’s just a part of what makes me me. I don’t let it define me for sure. I remember what my mother said after my diagnosis: don’t worry, maybe you’ll get better!
Bless her 🙂
Anyway, a really lovely piece.
Glad it made you smile! So true about everyone being different. I guess I was just hoping that my more obvious autistic traits would be more acceptable in an autistic space, but autistic people have the right to be prejudiced just as much as anyone else. 😛
It may be that some of those guys feel so uncomfortable with themselves, that seeing common traits in others gets them going – but I’m not a fan of over speculating. It would make a wonderful study though. God help anyone trying to stop me rock :p
Would it be OK to use some of the observations you made in your a group in a piece I’m writing. I’ll let you see it first if you like and you can decide whether or not it can stay- it’s just it got me thinking about certain parallels between effectiveness and what we’d think ought to be effective, with regards to three different processes – the behaviour you describe, the reception of specific labels and teaching strategy. Funnily enough, there are traits here which are delightfully cross-contextual.
Having someone take my experiences and my words and incorporating them into a different piece and giving them a different context and perhaps meaning… that sounded incredibly scary at first! And then I thought, “Hang on. That’s what art is about. Getting inspired. Deriving. Creating new contexts and meanings.” So. YES! Go ahead. I’d love to read the finished piece, but you don’t need my permission to publish it. I don’t need that form of control. My source is here, in the words I’ve written and published.
Ooh, that was quick – thank you so much. I hope you find it interesting. It’s just I read something this morning and it kind of tied together a few threads that I couldn’t see previously 🙂
I am sorry and I am happy (about different parts of what you wrote, of course).
It’s different, but I can relate as an odd geekette in a workplace where people are almost all a bit odd… and yet sometimes I let my guard down and am a bit more odd than acceptable, it seems, because people pause and say “…OK.”. I can hear the ellipsis. Actually, I don’t understand their reaction. I mean I understand cognitively, but can’t they see that all of them are odd and have visibly odd behaviours in public? It’s quite an accepting group, and usually I feel OK to relax and be my odd self, but lately maybe I reached the boundary.
I hope you can find more accepting autistics to be yourself among them, and I also hope that the ones you met are just having a hard time to begin to accept themselves and will evolve positively. Stay strong as you seem to be, and you’ll find your group, I am hopeful!
—
Side question: this affects me as I have a hard time starting social bonds (as long as I go through the starting phase, I usually am very social for an introvert, but the starting phase is terrible). So: does anybody have any experience of places or activities where people are more accepting of people who are simultaneously odd, geek and introverts?
The most accepting person I talked to was actually the only person in the room without an autism diagnosis! She was the coach of one of the guys there who wanted someone familiar around, and we had a lovely chat about functioning as an autistic adult instead of trying to function as a “near-normal” one. So you never know where you are going to find acceptance.
The thing with being odd in the work place, I recognise so much of that. I mean, I worked with someone who collected Star Wars LEGO and who always brought the exact same lunch to work every day instead of eating the office lunch, because “the bread and cheese at home was the right kind”. And I still got the ellipsis (love that phrase! it’s so spot-on!) when I started talking about the Guano Wars and how fascinating they were. I mean. Seriously. I’m not the only odd person here, you know?
I love this post: I also embraced my Aspergers as finally making sense of much of my life up to that point. I found I understood myself properly for the first time. And I recognised that I was expending energy trying to be like other people around me, trying to pass. Forcing myself to act unnaturally.
So I decided that I would start to show my natural behaviours. If I want to repeat parts of my shopping list as I walk through the store then I do it. If I want to flap then I do it. Regaining my flap has been one of the most positive aspects for me: I love to do it because it makes me so happy.
I’ve never met anybody in real life who identified themselves as autistic and, honestly, my expectations have also been shaped by the online community. It’s a sobering thought that I get more understanding and empathy from the NT people I socialise with than you found among a group of autistic people, and I guess it demonstrates the positive effects of accepting yourself as an important step towards accepting others.
Yes to all of this!
I haven’t gotten involved in any formal groups, though I’ve met several of the people I’ve gotten to know through blogging, and have been so fortunate that they’re people with the kind of outlook that lets us just let down our guard and relax around each other. Strolling through Greenwich Village in NYC with a bunch of new friends and flinching at all the same noises was something I had never conceived of as being a lot of fun before it happened. 🙂 I have a couple other autistic close friends, and mostly we don’t even talk much about being autistic, we just enjoy talking to someone who talks and thinks the same way we do.
“flinching at all the same noises” Oh my, that sounds so funny! What you describe is basically what I’ve found in the blogging community. It doesn’t really matter that it’s not in person. The sense of just having someone to talk to who thinks the same way is marvellous.
“flinching at all the same noises”, I like that. I flinch at a lot of noises (and also camera flashes), and I think I would feel quite at home if I noticed someone else flinching at the same noises.
Love, I’ll start a REAL autistic group with you anytime you like! If I were in UK, we’d stim in a room til all hours and hang out happily ‘looking’ autistic. And yes, blogging from a place of acceptance is a perfect way to say it (and do it)!! xx
That sounds like a blast! 😀
This is a fascinating post and it really hit a nerve with me. I have always tried to be accepting of others, and I have seen people from time to time who were flapping their hands or had echolalia or tics and was not bothered by it (aside from being a bit saddened by the obvious discomfort of those around me). But I am a lot like the others at that networking group. I have always chosen to try as hard as I can to pass for “normal”. I find the prospect of social isolation frightening and I don’t like feeling different. I cringe when I hear that well-meaning but patronizing tone people take when they realize you are a bit off. I fear the consequences that sometimes come of being presumed incompetent, and now that I have a family it is vital that I not appear that way. I’ve always wanted friends and a family and meaningful work and the world has decided that you have to be normal to have those things, and I think that is where a lot of the other “high-functioning” adults are coming from.
I am standing on both sides simultaneously. On the one hand, I’m the pragmatist who does what she has to do to live the life she wants; on the other hand, I am the idealist who hopes for a more accepting world and tries to be the change by accepting others. It’s a weird place to be.
It is hard to walk that line. But I’m very aware that I have the ability to choose. To appear normal. It takes a lot of energy but I can do it for short periods of time. And I don’t think that’s right. So I am the idealist, like you say, standing up for the right to be visibly different, both for myself and for my autistic brothers and sisters. To model and teach acceptance. To show autism in a “that’s just who I am” way.
However, I am also the pragmatist, same as you. The next time I have a job interview, I will try and disclose about my autism in the light of strengths that I can bring to the job that non-autistic people can’t, but you can bet I won’t be visibly stimming while doing so.
We need to choose our own battles.
Aw, that must have been a huge disappointment. I also went to a local Aspie meeting a few times, but I had a rather positive impression. People mostly talked about how they cope – or fail to – with autism-related issues, especially regarding work and social security. I didn’t continue only because of language issues coupled with a noisy location (I am an expat with a limited command of the local language). I have to point out that this group was born as “alternative” to the city’s main Aspie meeting, so that might be a thing too. Anyway, it was quite interesting to see other autistic people in “real life” and to talk freely about our condition (I had met only one other Aspie before) 🙂
Please don’t get me wrong, it was still an overall positive experience and I am going to be attending regularly (I have been twice so far). It just struck me as incredibly odd that people who know what it’s like to be treated as different would see me as “even more different”. Especially when they make assumptions about my level of functioning based on my visible autistic behaviour.
Oh, that’s a relief 🙂 I also hope they’ll benefit from getting to know you, since apparently you are much more self-accepting than they are 🙂
That makes me sound like some shining beacon of autisticness, lol. I’m not sure if I want to portray myself that way. But I do have a high level of self-acceptance, maybe because my parents have always taught me that it’s OK to be different.
what a wonderful post (at least the ending) I too found the blogging community fairly early in my journey and am often shocked by the prevalence of contrary and non-acceptance views of so many when i leave our “bubble” we all have here. But, i am so thankful for having the bubble to come back too. 🙂
I’m working on expanding the bubble! I want everyone to be in the bubble! Because it’s NICE here! 😀
Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam
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I’ve never read anything like this before. Such an interesting insight, thank you for sharing.
I’m sorry you didn’t find more support in your groups 😦
Thank you for commenting! It’s OK, I find so much support in the online community. And that does give me the strength to be a better activist for acceptance in the wider autistic community. Which will hopefully help others who don’t have access to this community for whatever reason (language barrier being an issue, for instance).
You’re a really good activist, informative and humorous too. An inspiration not just to the autistic community but to everyone.
Thank you so much. Compliments like that make me feel slightly uncomfortable and super awesome at the same time! 😀
I am very glad to hear that you found acceptance and fellowship eventually; I hurt for you while reading about your group experiences.
Thank you for sharing such an important and personal post with our hop. x
Thank you! I really enjoy participating because I see so many parallels in what we fight for throughout the disabled community. The quest to be allowed to be ourselves. To be rude without people saying “Oh that’s just your Asperger’s speaking”. To be kind and loving without people saying “Oh yes, all people with Down’s are like that”. It’s all taking away from our humanity and our human freedom of choice.
I am not good at large groups in general and your experience pretty much outlined what I don’t like about them 🙂 – the posing, the pretending to be something I’m not. I don’t know how “normal” I look but I know I can in most situations (probably not at pub nights lol). If I don’t feel comfortable I usually feel my face go blank and numb, and speaking becomes too much of an effort. But I tend to avoid those situations as I don’t enjoy feeling that way. I generally stick with what (and who) I know.
I’m a very outgoing person but I always score as introverted on personality tests, because of the sheer energy it takes to cope with lots of people and lots of noise and lots of lights. I’ve always been labelled “odd” or “quirky” so I never tried as hard as some others to fit in, but there’s also a certain pressure to conform which makes it hard to navigate groups as well. And then coming out with totally unacceptable things to say, lol! So I usually stick with people who know me and the way I can be. It’s much easier that way and I don’t have to pretend as much.
That is an interesting difference between the attitude of the online autistic community and an face to face group. I wonder how representative the autism advocacy culture is of the total population of autistics; and how big a proportion of the autistic population have the type of attitude you describe in your post. Maybe the group represented a specific subgroup of autistics because of the source of recruitment or the way it was done:-) How many were in the evening group?
I tend to rock slightly when I’m processing things (e.g. eat relaxed at home or watch a movie or think) or if I’m standing and waiting anxiously or trying to cope with noise around me, or I may touch surfaces or rub my fingers et.c., but I try to be subtle and don’t think it is noticable (I could be wrong of course!). I didn’t notice it myself until I suddenly started to pay attention to what I’m doing with my body, in the light of having read about stimming:-) I think it is or should be OK to stim subtly for anyone – autistic or not, it doesn’t need to be an “autistic badge” because it makes it easier for anyone to process feelings and relieve stress (animals do it too in various way).
However, I am not sure it is helpful to stim blatantly, to sort of use it as an “identity badge”. Maybe it can be in some ways, but I suspect it may alienate people (even fellow autistics), and isn’t necessary… there are plenty of other options. I think the boundaries for personal moves should be wide as to give everybody plenty of room to move, and it is good to expand the boundaries, but being to blatant about it may have the opposite impact as intended… come across as a charicature of autism, and make people more inclined to control themselves, tighten their controls especially if they already aren’t too optimistic about it.
I didn’t say I used it as an autistic identity badge. I said I was unapologetic about it. This is how I move. And it is necessary for *me*, I wasn’t doing it to educate people. I’ve suppressed it for years and wondered why I always needed two or three days to recharge after a social gathering. Now, I did feel worn out after the gathering (about 20-25 people) but much less so than usual. I wasn’t subtle, but I didn’t harm anyone, and I didn’t infringe on anyone’s personal space.
OK… so what you are saying is that it isn’t so much about the actual behaviour as it is about letting go of self-suppression, that makes good sense.
Yeah, I figured that in an autistic safe space, I didn’t need to suppress my natural behaviour.
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In trying to explain my frustration to the 100th therapist, I drew a bar graph showing how much more effective wearing earplugs and rocking are at soothing me than breathing exercises.
Suppressing the urge to stim feels much like when you gag into your mouth and swallow it. And we’re so used to suppressing it that when we go to a doctor or therapist with our needs and say, “I’ve self-diagnosed with autism,” we’re received with angry, sometimes even hostile responses: “No you don’t. People with autism don’t LOOK like you,” or “people with autism don’t care about other people’s feelings.”
I’m done with suppressing myself; however, allowing ourselves the freedom to BE ourselves invites oppression from society. It takes bravery and incredible strength to overcome the pressure to pretend to be normal – for everybody, not just those with autism.
Your posts continue to inspire me.
JBird
Yeah, the urge to “pass”, to fit in, is incredibly intense. In my case, it helps to know that I’ve never fitted in, that no matter how hard I try the best I can hope for is an affectionate “weird” or “crazy”. That makes it a lot easier to embrace and accept myself as I am.
I’m thrilled to hear that you feel inspired by my writing! That’s a huge compliment. Thank you!
I have never met with anyone who has identified as autistic, apart from one person who could be a stand in for Dustin Hoffman’s character in Rain Man. That was before I was diagnosed with Asperger syndrome.
on the other hand I have meet with numerous migraineurs who refuse to believe it’s possible to have a migraine without an intensive throbbing headache and nausea. I seldom get nausea, headaches can be minor, but symptoms such as photophobia, phonophobia, language difficulties and cognitive skills are severely affected. In other words I don’t really have “real” migraines.
It seems to me that too often people try to fit others into predefined moulds, even when it’s obvious they won’t fit.
On some days, I could be a stand-in for Rain Man, too. 😉 But I’ve learned to hide it so well, like many other autistic kids, that half the time I’m not even aware of it myself.
Your words about migraines sound similar to Ischemgeek’s stories about asthma, where even doctors don’t realise it’s an asthma attack because they try to fit the symptoms into their predefined moulds. It’s a sad state of affairs when so many times, instead of getting the help we need, we need to educate the people we need help from.
Great blog post. I can really understand (and feel) your disappointment after the meeting. And I take my hat off to you for going to the second meeting.
I don’t think the acceptance made you different. It made you YOU. So you can be yourself without all the pressure, stress and anxiety that comes from trying to “be normal’. Many aren’t capable of that. Heck, I’m still not capable of that! It’s causing me nothing but troubles and I don’t know how to flip the switch. I never attended group meetings and I don’t think I ever will… too exhausting. But I guess that’s partly the social anxiety speaking. 🙂
I do have a strong sense of individuality and a core of “it’s OK to be me” that really helps me navigate these situations, it’s true. But I do get a lot of social anxiety in groups of neurotypical people because I KNOW I’m getting it wrong and I KNOW nobody is going to point it out to me and help me understand, they’re just going to judge me in private. Funnily enough that feeling was a lot less in a group of autistic people. Because I knew I was still getting judged, but I also knew I was getting it RIGHT for the first time in my life. I was behaving like I ought to. It was immensely liberating.
I wonder if the ladies in the first group you described had earlier diagnoses.? Although I can’t seem to get an official diagnosis, I was thrilled to feel that there was a neurological explanation for all the difficulties I’ve had. While I own and take responsibility for my mistakes, I feel vindicated in regards to my social struggles as a child. I came from a place of honesty and fear, and, at that time, could not understand how to function socially on a cognitive level.
Thank you for sharing your stories and being so supportive. People like us in the blogosphere have provided more understanding than I ever could hope to receive in the NT world
I think so, the oldest girl in the group had gotten her diagnosis at 24. So yes, maturity might help in accepting the possibilities and explanations that an autism diagnosis offers.
I’m glad to hear your journey is helping you. The blogging community is definitely a lot more accepting on some levels than everyday society is.
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