Susan's Blog

Monday, January 30, 2012

Disability: It Really Is Okay

I took Nat to the Autistic Self Advocacy Network (ASAN) meeting on Saturday, at the invitation of a friend who is on their board. I’ve been wanting to write about this but I’m afraid to. Talking about autism is a freakin’ landmine, and the only way to get through it alive is with honesty, compassion, and sensitivity. So here I go, hopefully.

I really like the people at ASAN and I approve of most of what they stand for; they do things like push for legislation that would end the use of aversives in the state of Massachusetts, or comment publicly on the new definition of autism in the DSM. To me they symbolize the neurodiversity movement, or what I think of as real autism awareness: to make society aware that autism is not a tragedy or a disease; it is a difference in neurology.  Autism Spectrum is a political minority that must be respected and accommodated, like any other group that is outside the norm.

Even though we parents of autistics (most of us) want nothing more than for our children to lead fulfilling lives, be happy and healthy, and even though adult autistics (most of them) likely want as good a life as possible, health, and happiness, there is a lot of animosity between the groups.  Why is that, one of the ASAN members asked the other day.  I ventured to answer, “Because you don’t look like their children.”  He was upset by this, because he felt it was an unjust judgement of him and others like him, with high-functioning Asperger’s Syndrome.  He asked how could these parents make this assessment of him, not knowing his functioning level as a child?  Maybe he’d been nonverbal as a kid; maybe he’d been self-injurious or aggressive. Just because he is not like that now doesn’t mean he is not on the Autism Spectrum with your (my) kid.

I completely understood his point, and agreed with him. And yet I also completely get where these parents are coming from, the ones with more deeply autistic children.  And it was very significant to me that the ASAN members there were mystified by the antipathy of some autism parents, because I had brought Nat with me to the meeting.

We were in a very very quiet Trustees room in a public library. There were four ASAN members there when we walked in, a little late. Two of them I knew and one of them is, as I’ve said, a friend. Everyone greeted us warmly, and then continued with their conversation, which was about the DSM and its boneheaded intent to alter the definition of autism and effectively lop off a significant number of Aspies who will no longer fit the criteria. Who will then no longer be eligible for any disability services.  Comes the Revolution…

The moment we sat down Nat turned to me with those Bambi-in-the-headlight eyes. “Party,” he said. “Snacks.  Cookies.” In other words, “Mom, you said there’d be snacks here! You said it would be like a party.”  So right away I felt a little bad because Nat was not happy with what we’d found there. Somehow I’d thought he would know what I meant by meeting. I guess I had said that it was kind of like a party. Well, some meetings are.

This meeting was the other kind, the pin-drop-silent kind.  The very very intelligent, cerebral angels-dancing-on-the-head-of-a-pin kind. And there was Nat, feeling a little miffed and uncomfortable, and so his solution was to talk to himself.  This will be very interesting, I thought, as I noticed everyone noticing Nat’s self-talking. They were noticing but they were not remarking; they spoke over him and along him.  They were okay with it, in other words.

But I, of course, was not. I am the Queen of Oversensitivity. I see insults where they don’t exist. I feel the hot flash of shame when other people are in the wrong. I feel embarrassed pretty easily.  And so I worried that Nat’s self-talk was a big distraction to everyone. I wondered if anyone in the room had issues with too much noise, with essentially two conversations happening at once. I had no reason to believe there was a problem, but I felt that Nat’s sounds were awkward.

It was like the proverbial elephant in the room. I wanted to ask people if they could concentrate okay, but I thought that they would be offended for Nat. Even though they might actually have been having trouble, it felt like it just wouldn’t do for anyone at an ASAN meeting to complain of someone else’s stims. I am not being facetious here. I was overly conscious of what we could have talked about but were not. They were either too polite to or did not notice.

At one point the conversation turned to “what is repetitive behavior?” and Nat’s talking became so loud that I whispered very very quietly to him that he should try to whisper… He, my lovely Nat who always tries SO hard, obliged, and whispered to himself for a good long time after that.

I’m the one who is very very unlovely, because I was trying to stifle his stimming even when we were among autistics! I nearly choked on the irony. No one gave a shit about the self-talk: so why the hell did I?

We stayed through the meeting; every now and then someone would try to draw Nat into the conversation, sometimes guessing (wrongly) at what he’d answered, sometimes just high-fiving him. I truly enjoyed the discussion, because I really do want to be a bridge between autistics and parents of autistics. I feel that in highly incendiary situations like that, my oversensitivity is a good thing. I felt that I did a good job explaining how the angry parents feel, that the adult Aspies do not resemble the “low-functioning” autistic people.

I did everything but point out the elephant taking up so much space in that quiet little room.  “Look!” I could have said. “Case in point! Look how different Nat is from you guys! Do you think he even knows half of what you are talking about?” I wanted to ask this but I didn’t because it would be disrespectful to Nat and because I didn’t want to piss anyone off.  And maybe it wasn’t even true.

Driving back home, I asked Nat if he’d want to go to another meeting. “NOoo,” he said immediately, definitely. I smiled sadly to myself, feeling something like, “See, he didn’t get anything out of it.”

But still I wanted to talk about it all some more. I decided to go right to the heart of the matter. “Nat, those people at the meeting have autism.  You have autism, too.”

“Yes.  Have autism.” He was staring at me, clearly waiting for a conversation.

Whoa. “So, okay, you have autism, and I don’t. Autism means you have a hard time talking to people, a hard time understanding things sometimes.”

“Yes.” He was still staring at me as if I were giving him the key to the universe.

“Autism is called a disability, Nat. Disability means it is hard for you to do some things. Like talk. Autism is a disability.”

“Yes.”

“You have autism, Nat, and so you do some things differently, okay?”

“Okay.”

“And that’s okay.”

“Okay.”

But I did have to admit to this second irony of today, which is that clearly I’m the one who still doesn’t know that it really is okay.

22 comments

The prospects of no (none, zero) services for persons with Aspergers is less likely I think than those who fear that result from the DSMV. I expect ‘services’ from different sources to fill the void.

“Autism Spectrum is a political minority” indeed. There’s a kind of faux honor to being a minority in our society. Seems like groups that identify with a minority status get sucked into a whole pattern of activism that I do not find effective. But when I read/see an individual who has an aha moment, that’s real change, very effective for a ripple effect. Especially someone like you who has the talent to and a platform on which to share your realization.

— added by Barbara on Monday, January 30, 2012 at 9:47 pm

Oh, Susan, you always write so beautifully, so compassionately, and so intelligently about the hardest issues in the world! I love this.

— added by Claire on Monday, January 30, 2012 at 10:44 pm

Great piece, Susan. Always enjoy reading and after you had posted you were taking Nat to the ASAN meeting I was anxious to know how it went! And II ask myself that same question very often because I have 2 children: 1 high and 1 lower functioning; is it really OK? Thanks!

— added by SarahConley on Tuesday, January 31, 2012 at 5:22 am

Sounds like an interesting experience at the meeting you went to with your son, Nat. I have been wondering that myself for quite sometime, if it really is ok to have a disability? I noticed I am not accepted as much as I should be. However I can imagine how much other people who seem even more different than me will not be qualified to work high paying jobs when they turn adults, hence will be less accepted in society. Or those people who just can’t work at all unless they have total supervision. Then again, may be it is okay, but I am just not sure. I try to be a good advocate to help others on the spectrum every day of my life. However may be to be a better advocate we all need to listen and observe more to those people who just struggle to wake up and get through a morning. We are all connected in some way all the time, just look at your smart phone 🙂

— added by Jason on Tuesday, January 31, 2012 at 7:38 am

I shush mine when he gets too loud too. We seem to have worked out a bit of volume control in public. I also try to do it b/c if he gets wound he wrings his hands and that left one is damaged b/c of it. Flapping… no issues… but the other… It’s one of the reason’s we started piano lessons to do physio on that hand. Force him to use the ring finger. BTW he loves piano.

I firmly believe the “HFA” can grow out of the dx b/c I have one that is starting the testing process to see how far we’ve come. So IMO “starts as a child” changes too “matures and developes” into an adult happens so I don’t sympathise with that comment by the ASAN members. If they didn’t develop out of it… that’s different. IMO autism is a DISABILITY not a “WAY OF BEING”.

I dislike it when others try to guess some of the “speak”. I am lucky to have a teacher (his self-contained teacher) that when I told her it was like a crossword puzzle she got it. I still remember the first time she figured it out – she sent home a note – he said “applesauce”… it took her a little bit but by listening and watching him but she clued in he wanted to sit on the floor. They teach the children in the primary grades in a reg. class to “criss cross applesauce” (cross their legs) when they sit on the floor. Now, he’s come a LONG ways in 18mths from that day and his speech is clearer every day – plus he has his tri-fold + flip book to use to find words… but who would ever get sitting on the floor from “applesauce”???

— added by farmwifetwo on Tuesday, January 31, 2012 at 7:54 am

Ha! Applesauce indeed. We used to call it sitting “Indian-style” when I was a kid back in the Late Iron Age. Later it changed to “tailor-style” (huh?) Soon someone will become offended by “criss-cross applesauce” and it will change again.
Susan, if I were making a film about autism I would include a scene where highly verbal self-proclaimed “Aspies” sat around a conference table and ranted about discrimination while a “lower-functioning” autistic person tried to follow what was going on.
And am I the only one who is irritated by people who high five persons with intellectual disabilities? It seems like patting a dog on the head and making it do a trick. I have a physical disability (I walk with a cane) and I sometimes notice strangers trying to size me up and figure out what’s “wrong” with me. I am quite capable at casting malevolent glances their way so I have yet to

— added by Jill on Tuesday, January 31, 2012 at 9:03 am

Sorry. My smart phone wasn’t.
I meant to say no one has tried to “connect” with me by high fiving, thank God.

— added by Jill on Tuesday, January 31, 2012 at 9:05 am

Jill,
You always do have an interesting take on things…! I don’t love the high five much myself, though I always give someone credit for at least trying to connect with Nat at all. You’d be surprised how many are scared. I don’t blame them for that, either.

— added by Susan Senator on Tuesday, January 31, 2012 at 12:02 pm

A crossword puzzle; for me it is kind of like a game of deduction, where I have to think about what might be important to Nat in a particular scene or event, knowing him as I do. And then to listen to the stretched out words, especially at the end of the phrases, to see if I’m right. I love it when I’m right, because sometimes it makes him laugh.

— added by Susan Senator on Tuesday, January 31, 2012 at 12:04 pm

Susan, this is the best post I’ve ever read that you’ve written! Thank you. You described the spectrum’s wide, wide angle, your feelings were mine completely…I wish I could tell you how the Hell we are all going to get along, but I just don’t know…perhaps with respect, and spreading awareness every chance we can, even in the autism community…like you just did 🙂

— added by Candy on Tuesday, January 31, 2012 at 1:27 pm

Susan, you really captured so many different points of view here. I couldn’t wait to get to the end of the piece and see how it all turned out! For the record, I think you’ll make a great “bridge”. Thanks for this post!

— added by kim mccafferty on Tuesday, January 31, 2012 at 2:47 pm

Hi Susan, I didn’t want to take up a ridiculous amount of space in a comment, so I thought I’d post my commentin my space. http://theautismwars.blogspot.com/2012/01/dear-susan.html

— added by Kerima on Tuesday, January 31, 2012 at 3:14 pm

Susan, you make a couple of comments that I have some issues with. You said “He was upset by this, because he felt it was an unjust judgement of him and others like him, with high-functioning Asperger’s Syndrome.” and then you said “I really do want to be a bridge between autistics and parents of autistics…I felt that I did a good job explaining how the angry parents feel, that the adult Aspies do not resemble the “low-functioning” autistic people.” Why does everyone have to assume that people who are part of ASAN and other self advocacy groups are all “high-functioning” or “Aspies”? That’s just not true. I mean besides the whole issues with “high-functioning,” because I know some people who are part of ASAN and similar kinds of groups who actually need a lot of support and services and who can’t really live completely independently and things like that. It’s really unfair to keep playing into the same kind of inaccurate dichotomy, that you’er either high-functioning Aspie or low-functioning “actually autistic” and don’t belong here at all, especially because so many people have such very uneven functioning abilities in things like taking care of themselves, communicating, and learning skills.

And the other things is your cmoment about being a bridge. I think that’s a great idea and I’m not upset at you at alll for expressing that. But what about autistic people who also are parents? I know there are a lot of autistic people out there who also have kids, and many of them have kids on the spectrum too. I know of at least two autistic people who have autistic children that might get called low-functioning or be perceived really easily that way. One of those autistic children probably has an intellectual disability too. But most autistic people who are parents get shut out of conversations ilke these ones because their status as autistic usually means they get the whole “you’re a high functioning Aspie so you don’t understand what it means to be really disabled” thing. It’s not so clear cut to say there are just two sides, parents and autistics, because some autistics are also parents, and I think a lot of us don’t really want there to be “sides” anyway.

I don’t comment on stuff a lot but those comments you made really bothered me, and I think they detracted a lot from a piece that was otherwise really well written and a good reflection on your own feelings and thoughts. Just my two cents.

— added by Theresa on Tuesday, January 31, 2012 at 5:43 pm

Interesting piece. It sounds like you recognise that most of your discomfort was about your own hangups, not necessarily about Nat or the other people at the meeting.

I think it must be pointed out that the ASAN is a very specific type of organisation: it’s a political advocacy group. As opposed to a support group. So naturally, I’d expect the conversations to be very…well, political. I support them wholeheartedly, and I’m sure they’d welcome my presence regardless, but I’m not sure I’d have anything constructive to add to the conversation, either. It would be like, well, being a parishoner at a bishops’ conference. Do you see what I’m getting at here? If there was discomfort, it may not have *really* had anything to do with the functionality levels of the individuals involved.

Y’know, reading some of the comments already on this topic (particularly from Jill), it really feels like we-who-are-on-the-spectrum just can’t win. If we try to engage people more affected, we’re patronising. If we back away, then we’re only concerned about ourselves. And we’re out of touch regardless, aren’t we. *sigh*

Being a bridge is good. I’m glad you did that, and I hope you continue to do it. I do think Theresa has a point in that there already exists an effective-yet-cruelly-ignored go-between: the overlappers, both parents of autistic children and autistic children themselves. There’s a lot of us out there.

— added by outoutout on Thursday, February 2, 2012 at 1:38 pm

I recently discovered your blog and must let you know how much I enjoy reading what you have to say. I often find myself staying away from autism blogs because of the animosity and negativity that they often radiate. Yours is wonderfully positive while not shying away from the difficulties that autism brings.

I myself would have found myself quite uncomfortable at that meeting too. Personally, I find far too much attention being paid to behavioural differences that autism brings. People should be accepted for who they are, different or not, prickly personality or easy to get along with. Why make a disability out of everything? I could probably be placed on the autism spectrum myself but I really don’t give a damn. Yes, I have difficulty with many social situations. I have learned to get through them. I am happily married and a mom of five. Socially isolated from my peers maybe but living a happy life anyway. Same with my father who, in hindsight, was almost certainly aspergers. Lots of difficulty finding jobs and keeping them. He immigrated to a whole new country, married after finally finding a job he could keep, and stayed married and raising three children. Difficult to get along with? YES! But we knew he loved us anyway.

What irks me is that help is so readily available for those who are so mildly affected, yet so very difficult to find for those with tougher challenges. Who are unable to communicate at all. Who suffer from physical pain but are unable to get any relief because no one understands them. It seems so unfair really. These are the parents who really need the services to help their child yet who often have to work the hardest to get them.

Sorry to write such a book! Just wanted to share that I really enjoy your blog. Keep up the good work!

— added by Susan on Saturday, February 4, 2012 at 9:58 pm

“This will be very interesting, I thought, as I noticed everyone noticing Nat’s self-talking. They were noticing but they were not remarking; they spoke over him and along him.”

Did they try to include him by adjusting the meeting so he could participant in a meaningful way, ie. did they provide appropriate accommodations and supports, or did they make token efforts and keep the conversation on what mattered to them?

Maybe I am reading too much into what you wrote but it seems like it was the latter. They saw he couldn’t participant at their level and so spoke over him. He was there and was tolerated, but was not included or considered in a meaningful way.

— added by MJ on Tuesday, February 7, 2012 at 3:56 pm

I have to admit that I felt a little like you say, MJ.

— added by Susan Senator on Tuesday, February 7, 2012 at 4:26 pm

Sounds like a very awkward meeting. I hope it was enlightening re ASAN.

I’m in the camp the the DSM 5 is a step in the right direction. For the first time it embraces severity as a concept and emphasizes the core issues of disability that define autism. I also think people with Asperger’s who demonstrate a need for supports are entitled to and should have access to them. Personally, I would have preferred a separate Asperger’s diagnosis but the APA is going a different route. If you read the proposals though, the APA’s reasoning is sound and logical. The DSM IV is so vague as to render the autism diagnosis far too broad, which is not only confusing for policy makers but because too many people are incorrectly included, endangers the availability of the scarce economic and programming supports for people with autism that you have so eloquently written about in earlier posts. ASAN protestations and lawyerly language notwithstanding, it is about getting scarce resources to the people who truly need them. People with Asperger’s whose disability markedly impacts their ability to function in society do indeed need access to supports. Those who have mild differences and are misdiagnosed because of vague guidelines, as well as the self diagnosers, should not be able to siphon off these resources from those who need them.

I’m not sure if you’ve done your homework on ASAN and they embrace a very radical ideology. It’s not “nothing about autism without us”, it’s “nothing about autism unless we have final approval”. ASAN opposition to CARA is exhibit A of their inability (or unwillingness) to compromise on issues.

— added by Dadvocate on Tuesday, February 7, 2012 at 10:43 pm

You remain a pioneer, an inspirational pioneer. What I feel fed by the most is your humanity in being Nat’s mom. Thank you for that!

— added by Stephanie on Tuesday, February 14, 2012 at 5:33 pm

“Did they try to include him by adjusting the meeting so he could participant in a meaningful way, ie. did they provide appropriate accommodations and supports, or did they make token efforts and keep the conversation on what mattered to them?”

You replied to this saying that you kind of agreed. On one hand I can understand why you would think that, but please do your best to be the bridge you are striving to be and consider the high-functioning autistics that were in that room. Perhaps they didn’t know how to include your son. Perhaps they hoped, that by talking around him they were actually encouraging him, specifically because they weren’t shutting him down like some NTs would. The fact that they attempted to include him in their conversation is pretty awesome in my opinion. I know that when I was a teenager adults ignored me all the time when they were talking about “adult things”.

I can’t speak for what was in their heads, your head, or your sons head because I wasn’t there and I’m only me. What I do know is that in that situation I would have no idea how to try to encourage your son to join in *precisely* because I’m a high-functioning autistic/have Asperger’s. I have issues with connecting socially, therefore encouraging someone else to speak that may have even worse issues connecting? No clue at all! What if I scared them off? What if I hurt their feelings? Etc etc.

I hope you don’t think I’m criticizing you, because I’m not trying to. I am like you and also want to be a “bridge”, and help the parents of lower functioning autistics to understand that there ARE high functioning autistics that are trying just as hard as you are, and we have as little idea what to do as you parents. Maybe you can give us a bit of a break?

— added by Telephonoscope on Monday, December 17, 2012 at 11:44 am

Yes, of course, I totally understand what you’re saying. I was writing this piece emotionally, not with a lot of objectivity. Thank you for your provocative and constructive points!

— added by Susan Senator on Monday, December 17, 2012 at 12:08 pm

“help the parents of lower functioning autistics to understand that there ARE high functioning autistics that are trying just as hard as you are, and we have as little idea what to do as you parents.”

Hmm, why do you assume that parents of “lower functioning” children with autism don’t know how to engage their children or other children like them? If you sit me down with my children or other children like them, I can usually find a way to engage them and get them to interact on some level.

Granted, doing this is much harder in a public or group setting than in a one on one setting and it can take some time, but this isn’t an unusual skill for parents to have. I know many other parents as well as scores of therapists who are able to do the same.

— added by MJ on Monday, December 17, 2012 at 12:51 pm

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