My Post on the “Self-Advocate/Parent Dialogues”, up at Autism Blogs Directory

There is an ongoing dialogue (in the form of posts by various interested parties) about the rift between self-advocates and parents of autistic children, over at Thinking Persons Guide to Autism (TPGTA). I found the dialogue quite frustrating, and have chosen not to get involved by commenting over there. Then I noticed that Kim Wombles of the Autism Blogs Directory had issued an invite to anyone wishing to share a post about such dialogues (generally, not just specifically to the TPGTA), and so I decided that was a suitable forum to share my concerns, and have done so. Do pop over to check it out:

Autism & Oughtisms: What are you talking about? Of Whales, Ripples, and Advocacy.

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10 Responses to My Post on the “Self-Advocate/Parent Dialogues”, up at Autism Blogs Directory

  1. Jim W. says:

    It’s a frustrating blog dialogue. I’ll read yours today. In essence it’s a lot of people who care deeply about autism, writing very nicely worded postings that ignore or misunderstand other people’s very nicely worded postings. I’ve really enjoyed the bits and pieces I’ve picked up from it about each groups interests and concerns, and really NOT enjoyed the stabby little back and forth.

    I’ll continue to read the postings. . . and comment on how well-written they are. . . and steer clear of the drama.

    • Sounds like a good approach Jim. And from what I’ve been reading around the blogosphere, your attitude towards and opinion of how the Dialogues have gone so far, is becoming more wide-spread. I’m not convinced the Dialogues have done more good than harm at this point, but I know they’re far from over on that particular platform.

  2. Jim W. says:

    Honestly, I feel like I have learned some things. I’m really just scratching the surface of the autism blogosphere and I loved reading some of the views expressed, regardless of whether they seem in keeping with the topic or not.

    Today’s blog posting, though well-written, said something about what parents can learn from self-advocates. . . then promptly ignored the subject statement (though I know it related at times) and essentially gave me back story on the author’s child’s life, which was interesting, but seemingly unrelated to the series. The whole blog series, like that posting, seems to have degenerated to a series of well-written non sequiturs, vaguely linked only by “autism”.

    If nothing else, it’s given me some great blogs to follow.

    • Sharon says:

      That’s an interesting assessment Jim. I really enjoyed todays post ( I am assuming we are talking about Christina Chew’s). I thought it was smart, as she spoke only of her position and that of her role as a parent to Charlie. She also talked of the importance of parents reaching out and connecting with self advocates, for the benefit of taking the ASD community forward, and that there was indeed an additional benefit in that listening to Autistic people speak helped to gain greater understanding of her child’s world.
      I just read it again, and I thought it was very clever. It is a lovely message of inclusivity and the power of Autistic voices, whilst acknowledging her primary role at this point as Charlies parent in assuring the best outcomes for him. I think she has managed to capture the essence of joining and understanding each other well. Not just in words but her real time life working alongside self advocates.
      The lack of comments does tell me I am probably in the minority on this though.

  3. MJ says:

    Do you think the series on TPGTA is worth taking the time to read it? I have run across most of the self-advocates and some of the parents before and have not been particularly impressed by what they had to say. I am not familar with Robert but all of the other people seem to be in either the ASAN style self advocate camp or are ND parents.

    So I have to wonder, if you are saying that it is just frustrating, do you think it is still worth the time to wade through all of the posts?

    • Honestly MJ, I’ve reached the conclusion that it’s not worth the bother because I think the discussion is un-necessarily divisive by the very way it is framed. It’s not so much “parents” vs “self-advocates” that’s at the heart of the issues, it’s more how people view and act towards autism, which cuts across those groupings (ie the attitudes and behaviours are not predetermined by which group you belong to). So by the very framing of the discourse, people start off defensive and confused.

      I also got the impression that many involved aren’t particularly clear on what they’re arguing for / against (or at the very least, it has been hard to determine as an outsider, what precisely they are arguing for / against): If it’s just “let’s listen” then there’s no argument. Obviously it’s more than that yet many of the writers seem to actively avoid specifics or talk around rather than to points, presumably to avoid overly upsetting others or from side-tracking the discussion, and yet that leaves the discussion rather hollow.

      I know others will disagree, and that’s fine, but that’s my 2 (or more) cents.

  4. MJ says:

    Thanks for the answer.

  5. vicki gleitz says:

    First, let me warn you: It is 3 AM and I have taken a third pain killer to try to get to sleep [I have some side effects from breast cancer treatment,so I can only hope this makes sense.

    I am an old autistic woman.i have both NT and autistic children and grandchildren. I consider myself a self advocate leaning towards neurodiversity.

    This seeming emnity between adult autistics and parents of autistics disturbs me greatly.

    I will use my youngest son, 19 years old, to explain where I am coming from. I am autistic. So is my youngest son.He also has a horrible [possible co morbidity] condition that causes him excruciating pain. [neurologist called it most excruciating pain humanly possible. He is nearly always somewhat suicidal.

    I am autistic. Because of that I understand my son in many ways that most people could never comprehend. I am also the mother of a child who is going through so much.As a mother I understand so much about my son that has nothing to do with my own autism. And love? Well, after spending half a million dollars on trying to find something to alleviate his pain, we now live in a mini camper in the mountains. I would do it over in a second. Not because I am autistic so I understand him better, but because I am his mother and I would do anything for him.

    Okay, I can understand him in ways that others cannot because I am also autistic. I can understand him like no one can because he is my son. the horrific ice pic, tazer like pains that cause him to pass out dozens of times a day? I can not understand them. I so wish I could because he feels that no one understands. I wish that we could find someone else with his condition so that he would feel understood.

    I am trying to make a point here. I have so much more to say but I think I am finally going to be able to go to sleep.

    I have ideas that I would like to address.

    Vicky

  6. vicki gleitz says:

    Okay,it is now morning and I am feeling somewhat better, so hopefully what I write now will be a little easier to understand [unless of course I am one of those individuals who best expresses herself in a near comatose state]

    My husband and I have organized a mini autistic retreat for later this month. It will be small [about 18 people]quite inexpensive [$100 a person, scholarships for those unable to come up with that]
    We’ll be staying at a lodge and have use of the clubhouse and other amenities at the resort in Colorado mountains we will be renting,

    It will be different than most other retreats for a variety of reasons. Just because of the “granny factor”for one. Because of that everyone is receiving a decorated,personalized, stuffed to the brim with goodies tote bag. also because of the ‘granny factor’there will be thousands of home made cookies, breads, cakes and pies.The first dinner will be a traditional Thanksgiving type dinner. There will be a lot of fun as well.

    There will be a number of speakers as well.I wouldl like to mention 2 of them. one of them is in the process of building a retreat center that is run solely by autistics. He hopes to one day also have jconputer related jobs available and a program to help sell crafts designed by autistics.

    The other speaker is me. I am a terrible speaker. I freeze. I shake. I cry. But I have something to share. that is a dream we are building into reality. An intentional autistic comunity within an already existing community.A community where people move here because they want to support each other. A community parents can purchase or rent out a home with another autistic family as well.a community where more high functioning autistics are mentoring, where members of the group help with respite care and where we put together communal activities where no parent needs to worry what will happen when their child needs or wants to stim [there are some incredibly happy stims] A place where small businesses can be created and where no mom or dad spends sleepness nights worrying about what will happen to their kids when they are gone.

    And we will need to be such awesome neighbors to others in the area, sending baked goods to their door, shoveling snow beyond our homes, inviting them to some of our events. and they will learn about acceptance.

    Whether you believe autism is a natural condition, from mercury, needs to be cured, is Gods answer to a need on a planet on the brink of self extermination or whatever, our kids need for us to put all the crap aside and be there for each other.

  7. vicki gleitz says:

    At our little retreat there will be a number of autistic young people [to me, under 50 is just a kid] who had truly horrific childhoods. I know that I did. I think deep pain in childhood makes for a lot of activism[the alternatives are not nice]

    Some of those attending are fairly well known autistic self activists and truly awesome people. I am making a goody bag,highly personalized,for each attendee. Maybe these young people never felt love as children, but when they get here they will feel so cherished, something most of them have never felt.

    So, before when I mentioned the intentional community within an already existing one and that some of the more highly functioning autists can do a lot to make life easier for the other autistics and their families? Well, another awesome thing will be for these young people to become involved in loving familes, see that they actually exist, and sometimes become an actual part of the family.

    I really hope that someone responds, someone knowing that I care about all of our kids [YOUR kids] and wanting to work together. This divide should not exist.

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