What do you think of autistic culture?

[Individuation]

I was wondering what many of the parents on this board think of autistic culture. Specifically, I was thinking about the fact that many parents of autistic children seem to be so at odds with autistic adults, to the extent that they almost seem like two separate interest groups.

Do you hope that, as your child grows up, s/he learns to leave behind most of their autistic traits and move entirely in mainstream society? Or are you glad that there's an "autistic culture" out there to facilitate the child's social well-being and independence?

I'm just really curious.

[Finch]

I'm in the middle on this one, leaning towards the aut. cultrue side. Here's what I think/want, in a nutshell. I don't think my son needs to be (or can be) "cured" of anything. I don't think he needs to (or can) "recover" from anything. I think therapies like OT and speech can help him cope with his environment so that he is able to thrive and be happy, just as he is. I want him to be able to do things like communicate, read, dress and toilet himself, and live as independently as possible. I don't try to stop him from "stimming" unless it interferes with something important like eating or sleeping. Does all of that mean I want him to be "less autistic?" I don't know. I don't care if he ever becomes the captain of the football team or be the most popular kid in school. I don't care if he never marries. What I DO care about is him being happy, being able to function, and being able to be independent as possible. If this means teaching him things like he can't stim constantly because he needs to learn, or he can't talk incessantly about Little Einsteins because he needs to be able to carry on somewhat of a conversation in order to effectively communicate his needs and wants or hold down a job, then yes, that's what I want. Do I care if he is obsessed with math or science and lives in a rural area, isolated from society? Not if he's happy. If that is what makes him HAPPY, that's fine by me.

[Individuation]

I wasn't actually trying to debate the cure issue this time (although FWIW I think yours is a fairly healthy attitude, Finch). Rather, I was curious how parents (who often are demonized by or at odds with autistic culture) feel about the idea that their children, who will eventually be adults, may be part of that culture. I mean, would most parents simply rather the child learn to function as-close-to-neurotypically-as-possible? Wouldn't a parent, who has spent the better part of their adult life dealing with the child's autism in one way or another, feel justifiably a bit irked by the "you couldn't possibly understand-"ness of the autistic pride movement?

[Finch]

Meh. I don't think I would be upset. Everybody has to find their niche. If he's most comfortable within the autistic culture, that's fine. I guess I think of it sort of in the same way as if he is gay. I am heterosexual, therefore I don't understand a lot of the nuances of homosexual culture. However I think it's great and fully support a homosexual/GLBT/transgender/whateverthepctermisthisweek culture and those who identify with it even if I am "on the outside looking in" and don't always "get" it. I just want him to be happy. That is my heart's wish. I pray for it every night.

[kchoffmann]

Originally Posted by Finch

I just want him to be happy. That is my heart's wish. I pray for it every night.

Me too. Perfectly said.

Also, I think, autistic or not, many many parents wind up with children who grow up and feel misunderstood by their parents. It's part of being an individual, separate from who your parents are and what they might wish for you (4 days of labor suffered or not. Heh-heh. Just kidding - had to do my little Jewish mom thing there).

[teasdone]

Finch pretty much said what I was going to say, only better. I'll still type my reply out, though, because I can't help myself.

I'm on both sides at once -- one half of me loves ds *exactly* as he is, and wouldn't change one tiny little thing about him, and almost revels a little bit in his funny quirkiness, to be honest. After all, he's not unlike his father, and his father is *amazing*, and is thriving as an "enginerd" and a damn good one, and a damn good father and husband to boot. So why would I want to do anything but embrace it? Why would that ever need "curing"?

On the other hand, both dh and I have siblings, and relatives going generations back, who do not function well as adults AT ALL. They do not live independently, they are unhappy, depressed, sometimes even homeless. They don't have friends, can't hold jobs down, and in some cases of the older generations, have ended up dying young in mental institutions. My sister is one of these, and I see in her many traits of a high functioning autistic who didn't get the right sorts of help. My brother, too -- he's been on suicide watch for much of the last decade, I hear him say all the time how much he "hates his stupid brain" and it breaks my heart. Back when they were growing up, no one recognized symptoms that would be diagnosed these days, and so they didn't get any kind of help or therapy.

So, for me, it's very important to try to walk that line, of loving exactly who my son is and not just seeing him as a disorder or a label, but also facing the disorder and the label so that I can get him the help he needs. Some days it feels like walking a moving tightrope while blindfolded, but all I can do is my best, and hope he thrives.

[SoVeryCherry]

I'm not irked by the autism culture movement. My view is this: my son is not of an age or cognitive level to choose his path at this time (he's very young). Given that, it is my responsibility to choose the path I feel most appropritate (in our case, recovery).

If, when A is of an age to make a choice, he chooses to immerse himself in his autistic characteristics, I will let him - knowing that I did the best I could to give him the tools he needs to succeed.

I read an article with a moderately autistic young woman who was attending college (with full time supports). She spoke with assisted communication, and said that everything she did was many times harder for her that for her NT peers. One thing that she said really stuck with me: Not every autistic adult is against recovery. The ones that are against intervention are those who are high functioning enough to talk and generally live independently. She would love to recover.

[wendy1221]

I have realized since researching what was "wrong" with my son, that I definitely have Asperger's as well. My dh agrees, and his brother and mother almost definitely has it as well, which explains why he felt comfortable w/ my quirks rather than repelled like most boyfriends I've had. He also has several autistic traits himself, but not enough that he would be disgnosed, unlike me. I guess he's just a "quirky" NT scientist. :P Anyway, before discovering the internet, and more recently the autistic culture, I never in my life felt like I belonged among other people. I always felt like an alien, and and when I was a kid, I had a fantasy that someday my real identity would be revealed and I could go somewhere to live w/ people like me, where I was normal. I have definitely embraced the autistic culture, although I do think that some people go a little too far sometimes. I think nonverbal/nonwriting autistics would likely benefit from some sort of outlet, so I don't think there's anything wrong w/ reasearching ways to help autistics communicate better, etc. I don't think that so much time and money should be wasted on finding a drug to "cure" us all, although I think drugs may be temporarily necessary sometimes to help someone overcome a particular issue and learn to deal with it, eventually without drugs (like my friend's aspie son who has panic attacks all the time.) I guess, like Finch, I am in the middle, but more towards the autistic culture side of the middle. I agree w/ everything she said. Oh, and I would also like to say that I'm really glad there is more awareness about autism and Asperger's than when I was a kid. It's very lonely and depressing to be the only "freak" around and have no friends. At least now, even if there are no other aspies/auties around, they know there are others out there. And there's always the internet. Plus people are more aware and less likely to let them be bullied.

[teasdone]

I took so long to compose my reply, I got behind in the conversation!

Anyway, to answer your follow-up question, I think I would be *thrilled* if ds got involved in the Aspie-pride movement (is that even the right phrasing? lol I'm still learning all this stuff). I would embrace anything that moved him towards a happy, independent adult life, even if that meant that one day teenaged-ds looks daggers at me and says, "For God's sakes, mom, back the heck off I'm fine as I am!" -- Heck, I will be THRILLED I hear these words one day!

[Jennifer Z]

I think Finch and I can just go around saying "what she said" today.

Also in the middle, leaning towards autistic culture. I am getting my son help in the form of ST and OT so he can learn to communicate with the outside world and feel better in his own skin, and we address stimmy behaviors that cause problems. (like his chewing...he went from chewing his fingernails and toenails until the bled, to chewing on his shirt. We are working on redirecting that to chewing on a grabber so he doesn't destroy his clothes in a half hour now).

Like a PP mentioned, we also have undx ASD in dh and I. Dh is like a milder version of ds, and I have a lot of SID issues. I think it helps us understand him better, although it is rougher for me because I am reasonably social. Since most of the people I love have some serious quirks, (including my best friend who is highly ADHD among other things), I am not really needing to push him to fit in too much, although I would like him to have some skills because it would make his life easier.

[wendy1221]

Originally Posted by teasdone

On the other hand, both dh and I have siblings, and relatives going generations back, who do not function well as adults AT ALL. They do not live independently, they are unhappy, depressed, sometimes even homeless. They don't have friends, can't hold jobs down, and in some cases of the older generations, have ended up dying young in mental institutions. My sister is one of these, and I see in her many traits of a high functioning autistic who didn't get the right sorts of help. My brother, too -- he's been on suicide watch for much of the last decade, I hear him say all the time how much he "hates his stupid brain" and it breaks my heart. Back when they were growing up, no one recognized symptoms that would be diagnosed these days, and so they didn't get any kind of help or therapy.

My dad is an alcoholic, my mom never leaves the house anymore unless she takes lots of (prescription) drugs. My little sister was OBVIOUSLY HFA, but she died at age 22 of drug and alcohol overdose. She was diagnosed w/ ADD, ODD, and bipolar. I'm still disgusted that all of these therapists she went to never recognized her many autistic traits. Handflapping, rocking, wierd hand to face repetitive movements, OCD type behaviors, trouble communicating verbally while at the same time being able to write beautiful poetry and short stories, bad eye contact, I could go on and on.

On dh's side, his grandfather was an electrical engineer who worked at the family dry cleaners. Dh's brother went to college for one semester and came home. He still lives in his room playing video games all night. He is an assistant manager at Best Buy, though, so I guess he's functioning that way. I don't think he could live on his own, though.

I have a B.S. in chemistry, but working is so stressful for me, I start hyperventilating just thinking about it. While I'm working, it's not so bad, although there are days I can't get out of bed. I've been talking about going back to school, but I don't really want to work. Ideally, the best job for me I think is something I can do at home and not have to deal w/ so many people on a daily basis. Not going to happen in my field. Maybe I'll just start sewing again and start up an internet business.

[mimim]

I would like for my DS to be able to get along with other people when necessary. Simple as that. Complicated as that.

In order for him to do that he needs to be more tolerant of other people and to learn how to have a reciprocal conversation and to maintain his self-esteem when he meets with people who are intolerant of him. Conversely, awareness of the many different ways that peoples brains can be wired and the value of divergent types of thinking needs to be cultivated in mainstream society.

At this point, he is not really interested in being an activist for autism awareness and acceptance. He's not really interested in being a part of an autistic community either. The social interactions he has all revolve around his special interests. I have pointed him to some websites and books to introduce him to the idea of being a member of an aspie/autie community, but he isn't interested. He says I'm "obsessed" (read - perversating) about autism. He is NOT ashamed of having Asperger's at all and will tell people about it pretty often.

I am not interested in making him "normal". I hope to help him cultivate his special interests so that he can find a career where he will be successful and happy as he is. I have no patience for the attitude that he needs to be "cured" or that he was "damaged" or "poisoned".

I struggle with social situations myself, but I find that learning strategies to cope helps me feel more comfortable. I was an odd, extremely shy, and smart child with few friends. Back then that wasn't considered autistic. Now it might be.

I don't know how the autistic culture movement would view my goals for my child. Is wanting him to get along in society wanting to limit his autistic traits?

I am curious how the autistic culture integrates people with more profound autism. People posting on message boards are obviously high-functioning.

[Individuation]

Originally Posted by mimim

I am curious how the autistic culture integrates people with more profound autism. People posting on message boards are obviously high-functioning.

I can see why you'd say that. That's a fairly common misperception, and I made it myself at first (when I started reading autism advocacy boards, blogs, etc.). However, several non-verbal people I know post on message boards, as do people who don't live independently. Plus, the standard for "high" and "low" functioning is often very subjective. Add to that the fact that the child's level of functioning is often no prediction of the eventual adult's level, and it just gets really very complicated.

I could point you to some blogs maintained by people who would probably be called profoundly autistic, if you were interested.

Thanks to all of you for replying so quickly to this, and for so openly sharing your own and your children's personal experiences.

[AllyRae]

Originally Posted by Individuation

I could point you to some blogs maintained by people who would probably be called profoundly autistic, if you were interested.

Thanks to all of you for replying so quickly to this, and for so openly sharing your own and your children's personal experiences.

I'm not quite sure we have the same definition of "profoundly autistic"...I used to work for the New England Center for Children--I was a behavioral analyst for the adult residental unit. Many of those individuals could not even dress themselves, use the bathroom by themselves, verbally communicate, read, spell, and most of them couldn't even use PECS...they were between the late 20's and the mid 40's. That is what I would consider profoundly autistic and I do not think they would be blogging at all.

And even with what is termed as "autistic culture", that culture seems to forget about those individuals, institutionalize them, and disregard them as being part of that same culture. Autism isn't the same for everyone...

For my son, he has to function in the culture he is surrounded with--he is the only autistic child in a preschool full of neurotypical children. Because he's only 3, the inability to function around other noises/people/distractions/etc. is hampering his development. At this point, I'm not even worried about whether or not he will be in his own subculture as an adult, whether or not he chooses to advocate for autism, or even whether or not he finishes high school. I'm worried about the here and now, and honestly, it breaks my heart to see him in a room full of children and him not having the skills to make even one friend. And because he's higher functioning, I see the pain in his eyes when he sees everyone else having fun and he can't figure out how to make that happen.

So, I guess I don't know... It's different for adults and children I guess... I just want him to be able to function in the culture he's surrounded by, and right now, that culture is not an autism-friendly culture. It's a culture where if you can't learn the appropriate social skills to be around other people, you are left to the corner to play by yourself, with no friends, and nobody to play with...and if you're my son, you're left in a world where it's traumatic and terrifying to have a parent out of sight because in your mind your world is only safe if your parent 2 feet in front of you. And that's not the world I want my son to be trapped in...

[myjulybabes]

It's nice to see other parents here who, when researching their children's issues went "aha! That's why I'm so different!" My official dx is ADHD (about 12 years ago), but I suspect if I were to pursue it now, it would be Aspergers. I move in both NT and Aspie circles, and quite frankly, I don't fit in either place. Over the years, I trained myself so much to follow the social rules of NT society that people who don't follow those rules can get on my nerves. But at the same time, I AM following a prescribed routine, not doing it because I "feel" it, KWIM? So I'm not quite at home with NTs either.

So if my son could find a home in the autistic culture and community, no, I wouldn't be irked. I'd be happy for him. I would like him to learn enough to function in larger society-- get a job, perhaps live independently, be able to date and marry if he so chooses. But if he chooses to only socialize with others on the spectrum, that wouldn't bother me at all.

Does that answer the question?

[krissi]

On one hand, I think autism culture great. I would indeed encourage DD toward those websites and groups when she's older if she seems interested in identifying with that culture. I don't hope she'll "leave her autistic traits behind" and move into mainstream society. Heck, I'm not that big of a fan of mainstream society myself! So I like that autistic culture encourages people to accept themselves as they are.

And most of DD's autism quirks don't bother me on any level except the communication thing. She can be introverted, quirky, whatever...that's HER and I love her for who she is. But it absolutely kills me that she can be sobbing and covering her ears and running around screaming "all done" for no obvious reason, and there's nothing I can do to help because she can't tell me what's wrong and I end up crying too. : Lack of in-depth communication a big issue in this household. For DH and I the primary goal of any therapy for DD is that she acquire a working means of communicating, whether that's spoken language, sign, or typing into a keyboard. Especially since she often seems to be in pain and there's not much we can do to find the source without her being able to provide more information on what she's feeling.

So I do find myself irked by some writings of people around the Web who assume that all parents who treat medical problems of children with autism are just not accepting their children. For us, working with a DAN doctor has nothing to do with trying to "cure" DD of who she is but rather to improve her health and quality of life. Lots of different things are being called autism right now so it's wrong that some people in autistic culture seem to assume that everyone's experience will be the same. (That said, I can see how the spelled out name of the DAN organization would bother some people and I do wish that they would change it...but that's another subject.)

[Finch]

Krissi, we use enzymes and probiotics too, I am not opposed to that. Helping my ds with his gut issues is a quality of life issue, I agree.

[Megamama]

Going along with Finch on this one too. Whatever works to make Eli functional and happy is what works for me.

ETA: I'm another one that I think would qualify as Asperger's in many ways looking back at my childhood. It has taken me many many years to learn to function properly in society and even now I live in fear of screwing up..a place where everyone was more like me might be comforting, or it might frustrate me..hard to say.

[JohannasGarden]

This is a very interesting thread for me. The likelihood that our son (6) has Asperger's (or something "around there") is just now being seriously raised (we've been pointing to/toward other things--ADHD, Tourette's and sensory issues). I will say that I consider input from adults with autism especially valuable, especially adults who see and articulate the positive aspects of autism and can explain what helped them or what they wish they'd received as children.

I think it would be great if my son someday identified with autistic culture. It would also be fine if that weren't his thing. Obviously, as a somewhat neurotypical parent, I wouldn't find a somewhat scornful or dismissive additude towards NT's to be helpful in my relationship with my son, and it would pain me if he reached a point where he felt he had to choose between maintaining respect for the NT (or at least non-autistic) people in his life. I also don't think that a scornful attitude towards any other group of people is really helpful in the long run--it's an understandable reaction, and preferable to shame and self-hatred, but not a helpful one in the long run. So obviously I would have concerns about a movement fostering that. But I think that autistic culture is a fairly new movement and will likely struggle with this. There will also be a necessary struggle with the question, "In our efforts to counter societal stereotypes, how do we avoid further marginalizing and indeed including those who fit those stereotypes?"

And, like others, while I don't seek a cure, "society should just be more accepting" isn't the answer to everything--like it won't help my son's bowel issues, and asking anyone, especially other children, to accept being bitten, crashed into, or unexpectedly bear hugged in a way that pins their arms to the sides is just too much to ask, IMO , and he's going to have to find an acceptable alternative as we work to reduce the need.

Sherri

[mimim]

Originally Posted by Individuation

I could point you to some blogs maintained by people who would probably be called profoundly autistic, if you were interested.

I would love to have those blog links, if you feel like posting them.