Autism parent’s listening day

1 Nov

Just as there shouldn’t be any one “Autistics Speaking day” (ASDay), there shouldn’t be any one “autism parent’s listening day”. That said, since this is “Autistics Speaking Day“, and I’m not autistic, I felt I would contribute by listening.

My guess is that Liz Ditz at I Speak of Dreams may compile a list of contributions from around the web in addition to those contributions on Autistics Speaking Day. As such, I’ll try to link to those sites. Julian Frost, over at AutismJungle, has the advantage of time zones and one of the first ASDay posts, Autistics’ Speaking Day: My Sense of Humour. I look forward to more ASDay posts.

Advertisements

62 Responses to “Autism parent’s listening day”

  1. Liz Ditz November 1, 2011 at 15:10 #

    Thanks for the shout-out, Sully. Yes, I’m doing my usual compilation of posts, but posting them at The Thinking Person’s Guide to Autism.

    For me, it’s “Autistic Ally Listening to Autistics Speaking Day”.

    For LB/RB readers who use twitter, you might also want to follow @thinkingautism. Carol Greenberg, adult with autism and autism parent is tweeting her thoughts.

    Current favorites:

    “I’m autistic, not sick, not broken, just neurologically outnumbered–CG”

    “My autistic son teaches me skills he learned from services I never got. We autistics live in our own little worlds? Another myth busted!–CG”

  2. Kathryn Bjornstad November 1, 2011 at 21:46 #

    Is it okay if I link to this post on the official ASDay blog? (I’m one of the organizer people.)

    I’ll be checking out Liz’s list too. Last year she was really helpful and knew about a lot of ASDay posts I didn’t know were being done. So thank you, Liz! ❤

    Kathryn

    • Sullivan November 1, 2011 at 22:38 #

      Kathryn Bjornstad,

      It’s more than OK to link to this. Thanks for what you (ASDay) are doing.

  3. Harold L Doherty November 2, 2011 at 07:28 #

    MJ at Autism Jabberwocky has an excellent counterpoint to Autistics Speaking Day which reminds the world that many autistic persons do not speak or have very limited speech.

    http://autismjabberwocky.blogspot.com/2011/11/autistics-speaking-day-listen-to.html

    Visitors here should read “Autistics Speaking Day : Listen to the Silence” at Autism Jabberwocky for a more comprehensive and inclusive understanding of autism disorders and the challenges faced by those with severe autistic disorder.

  4. Prometheus November 2, 2011 at 15:28 #

    “…which reminds the world that many autistic persons do not speak or have very limited speech.”

    While I do understand that many autistic people have speech difficulties, I never cease to be amazed that the people who claim to speak for them also seem so eager to silence those who can speak.

    Surely we can learn more about the “…challenges faced by those with severe autistic disorder.” from those who have autism and can speak for themselves than we can from those “neurotypical” people who – by virtue of their parental “intuition” – want to shout them down.

    Prometheus

  5. Harold L Doherty November 2, 2011 at 18:56 #

    “Surely we can learn more about the “…challenges faced by those with severe autistic disorder.” from those who have autism and can speak for themselves than we can from those “neurotypical” people who – by virtue of their parental “intuition” – want to shout them down.”

    Very big assumption by “Prometheus”, that autism as experienced by someone who is highly verbal is the same autism as experienced by someone who has limited or no verbal skills.

    Prometheus also dismisses as “intuition” the information that parents gather from direct observation and interaction, usually 24/7 over many years of helping a severely autistic child grow and learn and meet life’s challenges.

    My son’s name is Conor. He is “profoundly developmentally delayed” at age 15 1/2 with limited verbal skills. I guarantee you I know more about what his autism means to him than does Prometheus, or Ari Ne’eman or any of the high functioning professional autistics and Aspergians that are so contemptuous of parents and of the rights of autistic children to be raised by their parents, as recognized in UN declarations of the Child, and not by internet keyboard strangers.

    Harold Doherty (not hiding behind the name of a mythological Greek Titan).

    • Sullivan November 2, 2011 at 19:54 #

      “(not hiding behind the name of a mythological Greek Titan).”

      So? Doesn’t make you right, or him wrong. As I believe he has demonstrated many times over the years.

      I find it odd that you focused on the term “intuition” rather than the phrase “shout them down”. Also, much of your response is a non sequitor. Other parts are just plain wrong. For example: “Very big assumption by “Prometheus”, that autism as experienced by someone who is highly verbal is the same autism as experienced by someone who has limited or no verbal skills.” That clearly doesn’t follow from what he wrote.

      Surely we can learn more about the “…challenges faced by those with severe autistic disorder.” from those who have autism and can speak for themselves than we can from those “neurotypical” people…

      Someone who can “speak” may not always have been so. Someone who can “speak” isn’t necessarily verbal, “highly” or not.

  6. MJ November 2, 2011 at 19:54 #

    Prometheus,

    In my opinion and in my experience, there is as large of a functioning gap between a “typical” person and a person with HFA as there is between a person with HFA and someone who is lower functioning.

    Just because you have a form of autism does not mean that your experiences automatically apply to everyone with autism. I have three children on the spectrum, two of them genetically identical, and I can’t always generalize wants, needs, or experiences across the identical ones let alone the third one.

    However, unlike your assertion, I was not attempting to “silence” or “shout anyone down” but merely trying to remind the participants that they cannot speak for everyone with autism. Although if you look at the reactions that I got, there were quite a few attempts to shout me down and more than one ad hominem directed at me.

    • Sullivan November 2, 2011 at 20:06 #

      MJ,

      can you point to where Prometheus used, or implied, “HFA”? Being able to “speak” is not the same as “HFA” and not being able to speak is not the same as “LFA”.

      I haven’t seen the reactions you received, so I can’t comment on them. I guess I didn’t see the point in following a link to an obvious statement.

  7. MJ November 2, 2011 at 21:12 #

    Sullivan,

    Can you point to where I suggested that speech and HFA were related? The point I was going for in my post was general communication, not speech specifically. And, in my opinion, people with autism who have the functional communication skills necessary to participant in something like yesterday tend to be on the higher functioning side.

    I understand that isn’t always true but, in general, it is probably a good approximation. The quibbling point here is how many people with a form of autism have the functional communication skills to participant in something like yesterday.

    And for the implication of HFA, I would point to the quoted “severe autistic disorder” and how it is contrasted with “those who have autism and can speak for themselves”. He implies that this second set is disjoint from the first and says that they can better speak about the experiences of the former than “neurotypical people” who are parents.

    The reactions I am talking about were most twitter. Most (but not all) of the reactions are still visible if you looked for @autismjabberwky. I did have to block several people who were being completely obnoxious including one who was saying that I was “psychological abuser” so their responses aren’t visible anymore. But take the other responses and amplify it by a factor of two or three and you should get the general idea.

    • Sullivan November 2, 2011 at 21:55 #

      What I wrote was “can you point to where Prometheus used, or implied, “HFA”? ”

      I don’t see him using the term. I avoid it, hence the fact that I put “HFA” and “LFA” in quotes. I avoid it for a reason.

  8. Harold L Doherty November 3, 2011 at 00:05 #

    You quibbled but did not address my positions “Sullivan”.

    I do not believe that a stranger with high functioning autism has anything in common with my son. And certainly has NO right or rational basis to purport to speak for him. Ari Ne’eman, to pick a prominent example, has no more knowledge of my son’s reality than you do. Surely, you are not going to have the audacity to suggest that either of you understand my son better than I do? Surely you attach some value to your credibility and will not make such a claim?

    Persons with Aspergers by definition do not have an intellectual disability. Persons with high functioning autism will not do so either. I have quoted numerous respectable authorities on my blog site for the claim made by CDC expert Yeargin-Allsop that the “vast majority” of pre-1994 autistic persons, those who today would be diagnosed with Autistic Disorder pe se, also had intellectual disabilities. The absence of ID and the presence of strong verbal skills make persons with Aspergers/HFA unlikely to have any special insights into the realities of those classic low functioning autistic disorder.

    Why do those who are least impaired by autism, who do not even see themselves as having a disorder, feel the need to impose their views on the lives of those who are so much more seriously affected by what, for them is clearly a disorder?

    I know my son better than any stranger does. Law, morality and … common sense all require that I do so whether Sullivan, or Prometheous or other anonymous opinion holders like it or not.

    • Sullivan November 3, 2011 at 00:25 #

      Harold L. Doherty,

      as someone who routinely pops in here, makes a single leading comment insinuating something or another, then pops out again when asked to back up his claims, I don’t find you in a strong position to complain about people not addressing your positions.

      “I do not believe that a stranger with high functioning autism has anything in common with my son” By this logic, you have nothing in common with any other autistic other than your son. I look forward to you stopping discussion of that which you do not understand. It would be a first, though, in your long history of speaking out on subjects you misunderstand or don’t understand.

      “Persons with Aspergers by definition do not have an intellectual disability. Persons with high functioning autism will not do so either. ”

      Neither do you. Neither do I.

      “I have quoted numerous respectable authorities on my blog site for the claim made by CDC expert Yeargin-Allsop that the “vast majority” of pre-1994 autistic persons, those who today would be diagnosed with Autistic Disorder pe se, also had intellectual disabilities. ”

      Back when I read your blog I could write many of your pieces for you. You tend to string together a few quotes over and over again (how many times have you quoted Irva Hertz Picciotto?) Doesn’t mean you are correct.

      On a very real level, this doesn’t matter. For emphasis: it doesn’t matter whether the majority of autistics are one type or another. The majority of people in the world are not autistic. Does that mean that autistics don’t count?

      But, on another level: you are wrong. The majority of autistics are not intellectually disabled. The vast majority are not moderately or more intellectually disabled. And while you can cherry pick quotes from sources, even the CDC, the majority of autistics are not non-verbal.

      It’s time to start working together with autistic self-advocates. Not just because it is the right thing to do, but because it is the smart thing to do.

  9. Harold L Doherty November 3, 2011 at 00:36 #

    You are wrong Sullivan. The reference to the “vast majority” of persons with autism having had intellectual disabilities was a direct quote from CDC autism expert Dr. Yeargin-Allsop. She was referring to autism pre-DSM-IV which did not include Aspergers.

    Two CDC surveys found that 44% and 41% respectively of all persons with ANY type of “autism” today including Aspergers suffer from an ID. The 41-44 figure for all persons on today’s broad “spectrum” is very consistent with Dr Yeargin-Allsopp’s comment about what today would be Autistic Disorder alone.

    The Canadian Psychological Association estimated that 70% of persons with autism disorders, exclusive of Aspergers, suffered from some degree of ID.

    These are credible, consistent authorities who have confirmed the existence of a close relationship between ID and classic Autistic Disorder. As you know from visiting my site I have provided several other sources to the same effect. There is no cherry picking on my part. Your resort to that false claim is telling.

    Persons with low functioning Autistic Disorder live a different reality, a different existence and it is bizarre to pretend that they have anything in common with people who can function well in IACC meetings, attend multiple high profile media interviews, drive automobiles, run successful businesses, get married and have children. I have attended as an autism representative at a psychiatric hospital here in New Brunswick, Canada where several severely autistic persons are living out there adult lives far from the media attention of those HFA/Aspergers persons you seem to think have something to offer in the way of special insight.

    As the Christmas season draws nearer I wish you a Happy Christmas and hope that in your stocking you will find a tremendous gift … an ounce of common sense.

    • Sullivan November 3, 2011 at 00:44 #

      Harold L. Doherty,

      Not wrong. Sorry. Spent too much time actually looking at data and not just digging for the few quotes which support my ideas.

      I also disagree with your views and the way you portray autistics, including my own child.

      Persons with low functioning Autistic Disorder live a different reality, a different existence and it is bizarre to pretend that they have anything in common with people who can function well in IACC meetings, attend multiple high profile media interviews, drive automobiles, run successful businesses, get married and have children.

      I’ll start with the blatantly obvious: they are human.

      By the way, one parent brought her adult (or near adult) autistic child to the last IACC meeting. He functioned well, as you would put it.

      I have found nothing in the way of special insight from you, Mr. Doherty. Leaving aside, “special insight”, I have found Mr. Ne’eman (just to use that example) to be someone who does advocate on behalf of my child. Further, I have found that he works to create alliances within the broader disability community.

      Between you and him, I know who is making advances towards a better life for my child. It isn’t you, in case you were wondering.

      There are other reasons, Mr. Doherty, that do not wish to associate myself with you. I’ll leave it at that.

  10. Harold L Doherty November 3, 2011 at 01:00 #

    Thank you for your insults and your rhetoric Mr. Sullivan.

    You claim to have studies the data and that I have not. I have provided credible sources whose opinions provide the data as you know. You offer nothing except your allegiance to those who tell parents they know more about their children’s challenges than the parents themselves.

    What I do is advocate for a reality based approach to autism disorders. I do not ignore unpleasant facts and subscribe to the self promoting ideologies of strangers for advice on how to help my son.

    You have a good day Mr. “Sullivan”

  11. Marybeth C November 3, 2011 at 03:07 #

    Finally there is a one stop shop to get support, advice and products for your special needs child. The Sensory Spectrum Shop http://www.sensoryspectrumshop.com provides for all of your child’s special needs at home, at play, and at school. We have fun, useful and affordable therapy items, toys, classroom supplies and useful information and advice. We also offer natural treatment options, online reading materials, advice, advocacy materials and other helpful special needs resources. Best of all, we give back. A portion of our annual proceeds goes to help fund Autism research and many other special needs programs. Find us on Facebook! https://www.facebook.com/sensoryspectrumshop

  12. Julian Frost November 3, 2011 at 07:11 #

    Why do those who are least impaired by autism, who do not even see themselves as having a disorder, feel the need to impose their views on the lives of those who are so much more seriously affected by what, for them is clearly a disorder?

    Lovely strawman Harold. Make it all by yourself?
    I do not “impose my views” on others. I fight to make the world better for people with autism. I advocate so that children with autism aren’t regarded as damaged goods, and don’t suffer the fate of Katie McCarron. I want the world to accomodate us, just as it learnt to accomodate women, non-white people and the physically disabled.
    The fact that I am at a higher level of functioning than your son does not mean that I can’t advocate for him. Suffragette Emmeline Pankhurst was much more educated than the average woman of her day, and thus not a typical woman. That didn’t stop her fighting for the right of women to vote. Ditto Martin Luther King Jr, who held a Doctorate. Ditto Douglas Bader, who flew Spitfires in World War Two after losing his legs.
    Sullivan mentioned that Ari Ne’eman is good at forming alliances. Maybe you need to learn that little skill too.

    • Sullivan November 3, 2011 at 14:37 #

      Julian Frost,

      There is quite strong irony in the statement you quoted:

      “Why do those who are least impaired by autism, who do not even see themselves as having a disorder, feel the need to impose their views on the lives of those who are so much more seriously affected by what, for them is clearly a disorder?”

      Re read it with Mr Doherty in the role of “least impaired” (after all, isn’t that what non autistic means?) and yourself in the role of the autistic. Mr. Doherty feels the need to impose his views. For example downplaying the needs of individuals with disabilities which are not close in nature to those experienced by his son.

  13. Julian Frost November 3, 2011 at 13:12 #

    Comment of mine in Moderation.

  14. Julian Frost November 3, 2011 at 15:47 #

    Yeah, good point Sullivan. Harold does seem to want to stuff his views and ways down our throats.

  15. MJ November 3, 2011 at 16:25 #

    Julian Frost, you seem to be forgetting that having a diagnosis of autism is not the same as being a part of a repressed minority. There is a fundamental difference between being a “women” or “non-white” person and having autism.

    Autism is not a civil rights movement – it is a mental disorder.

    No one is taking away my children’s rights because they have autism but rather it is autism that has taken away fundamental abilities that every person should possess. My child should have the ability to communicate with the world. They should be free from the almost irresistible urge to injure themselves.

    So, no, when you advocate, you do not advocate on behalf of what my children need. What you do is minimize and marginalize them – especially when you compare their disability to something like women’s rights. That might be what YOU need but it is certainly not what they need.

    • Sullivan November 3, 2011 at 19:06 #

      “Autism is not a civil rights movement”

      No, but there is a civil rights movement by and for autistics. Or haven’t you noticed?

      • Sullivan November 3, 2011 at 19:42 #

        MJ,

        if you are content with the rights afforded your children, fine. I am not content with the rights afforded my family.

        Do you see this as an either/or proposition? Either we fight for better rights or we fight for better communication and happiness for our children? I ask this because sometimes people try to push that framework on me. When I push for improved rights, I am told that somehow that is the be and and end all of what I am trying to do in this world.

        One might take your comment to Julian Frost in the same manner.

        No one is taking away my children’s rights because they have autism but rather it is autism that has taken away fundamental abilities that every person should possess. My child should have the ability to communicate with the world. They should be free from the almost irresistible urge to injure themselves.

        The second sentence doesn’t follow from the first. No one is saying, “If your child’s rights are protected, your child will talk and not be self-injurious”. No one is saying, “Your child has communication problems and self-injury problems because she doesn’t have equal rights”.

        Now, I would say that your children have the right to services to try to alleviate both the communication difficulty and the self-injury problems. In my opinion, your children have the right to this, without having to present herself as an object of pity. In my opinion, the world as it is today does not afford that right. Certainly the world as it was heading 5 years ago was moving away from that. Your children have the right to this because your children are equals to everyone else in society, and her disability does not diminish that. Being recognized as equals is a right, one which is not often afforded to the disabled.

        I personally see disability rights as something which can benefit my child far more than Julian, Kassiane or Ari. This is not to say in any way that their struggles are not great, nor that the benefits they seek from disability rights are minor.

  16. Kassiane November 3, 2011 at 16:41 #

    This shouldnt be a controversial thing. This thread is full of examples of “parents of disabled kids just want their kids to talk & disabled adults to shut up”.

  17. MJ November 3, 2011 at 16:56 #

    Kassiane, I challenge you to point to one example where either Harold or I tell a disabled adult to “shut up”. That is nothing more than harmful and divisive rhetoric.

    The point you seem to be missing is that we don’t want to present your views as representing what our children need. You can and should advocate on your own behalf – just don’t pretend that you speak for us.

    • Sullivan November 3, 2011 at 20:19 #

      The point you seem to be missing is that we don’t want to present your views as representing what our children need. You can and should advocate on your own behalf – just don’t pretend that you speak for us.

      Sorry, who is “us”? Are you speaking for me? Are you speaking for all parents of autistic children? Are you just speaking for parents of autistic kids with ID?

      See how easy it is to fall into that trap? The “you are acting like you speak for me when you don’t” trap.

      What you do is minimize and marginalize them – especially when you compare their disability to something like women’s rights.

      Let’s recall what sparked ASDay. A group said promoted the “communication shutdown”:

      Our aim is to simply encourage a greater understanding from people outside the autism community. Social network users have become reliant and even addicted to platforms like Facebook and Twitter. And if they shutdown for 1 day, they will feel a sense of disconnection and a sense of frustration. By creating a little empathy, we hope to encourage a wider understanding and acceptance of people with autism.

      Does a person not using Facebook or Twitter for a day feel the sort of “disconnection and frustration” that your children do? It doesn’t represent my family’s experience at all.

      We will never know the results of this experiment, but I strongly suspect that if the Communication Shutdown had been proposed by autistic self advocates, we would be having this same discussion we are having right now. “I just want to remind people that not using twitter is not the same thing as being nonverbal”. “Why do adult autistics who can speak for themselves think they can represent my child”, etc..

      What I see in the discussions above is a lot of what I hope is going to fade. The “I’m an autism parent and I feel threatened by autistic self advocates”, which has the direct parallel, “I am autistic and I feel threatened by autism parents.” What I hope to see is a future of “We, autistics and parents, are working together to help the entire community”.

      We need to get past the “You don’t have exactly the same needs/desires as I do, therefore you are a threat and I won’t work with you” mentality. Guess what, adult self-advocates don’t have exactly the same objectives as I think are relevant for my kid. So what? Not every kid in my kid’s classroom has the same objectives either. Doesn’t mean I won’t work with the other parents. There are kids in other classes whose needs are vastly different than my kid’s. Doesn’t mean I don’t want to work with those parents. Adult self advocates do have some goals which are the same as my kid. So, why not work with them on those goals, support them on their separate goals and accept their support on my kid’s separate goals? And, while we are at it, work towards goals which benefit even those who are divisive.

      I’m not going to force anyone to be my kid’s ally. I will seek them out and work with those who are willing, though.

  18. stanley seigler November 3, 2011 at 20:57 #

    [mj say] Autism is not a civil rights movement – it is a mental disorder

    COMMENT

    they are not mutually exclusive…and autism (those with disabilities) are denied their civil rights…eg, FAPE…their inalienable right to the pursuit of happiness…

    stanley seigler

  19. MJ November 3, 2011 at 21:56 #

    “The second sentence doesn’t follow from the first.”

    Really? The point was that the problems my children have because of autism aren’t because of some right being denied to them. The problems that they have are due to autism. Maybe as they grow and learn and (hopefully) gain the ability to function on their own their problems will shift from functional to societal.

    “In my opinion, your children have the right to this, without having to present herself as an object of pity.”

    We must have had very different experiences. We don’t present our children as objects of pity – we present them as children who need help to reach their full potential. Any therapist who tries to approach them as object of pity would quickly learn that they are very capable little girls.

    “Sorry, who is “us”? Are you speaking for me? Are you speaking for all parents of autistic children? Are you just speaking for parents of autistic kids with ID?”

    Nope, nope, and nope. While my kids have autism, I would not presume to speak for all parents who have kids on the spectrum. And as none of them (appear to) have ID, I can’t speak for that either. I typically speak for my children and my experiences only.

    “Let’s recall what sparked ASDay. A group said promoted the “communication shutdown”:”

    That is not the point at all. The point isn’t the forum or the reason, the point is the message.

    For example, in one response to my post I had someone tell me “Autism doesn’t take anything away. Autism just is. It’s something that develops in its own way”. Another example is a comment in response to the fact autism prevents children from talking “It would be more appropriate to say that Autism never gave your child the ability to speak”.

    Both of those ideas are completely and utterly wrong. Autism most certainly does prevent a child from developing certain skills and it most definitely is a disorder of communication. As in yes, it has taken my children’s ability to speak and limited their ability to communicate in general. (Or in two out three anyway).

    This misrepresentation of what is reality for a large number of people on the spectrum is bad enough, but often it goes onto become an anti-treatment crusade. How many “self-advocates” support the use ABA? I can think of quite a few who advocate strongly against it. And yet, without ABA, my daughters wouldn’t have the limited communications skills that they do.

    “Doesn’t mean I won’t work with the other parents.”

    It does if they are directly advocating against what my children need. I cannot work with people who deny the reality of autism for my children and want to remove some of the most effective tools for helping them.

    Listen, I have absolutely no problem with people advocating for acceptance and being treated as equals. I think that is a great thing. What I do have a problem with is these same people ignoring the reality of what autism means for my children and ignoring what they need. Or to put it in other words, if you are advocating for equal rights for yourself, you had best not try to take away the “rights” that someone else needs at the same time.

    • Sullivan November 3, 2011 at 22:57 #

      “Really?”

      Yes. Really. That’s why I wrote it that way, and that’s why I explained what I was saying.

      “We must have had very different experiences.”

      I guess you haven’t been online for very long. Or not very observant. Pity politics are common in autism.

      “Both of those ideas are completely and utterly wrong. ”

      In your experience, correct? Since you don’t speak for anyone outside your own experience, then you aren’t now? See how quickly we slip away from the “I only speak for my own”. It took you only a few sentences to make that shift.

      “It does if they are directly advocating against what my children need.”

      Have I done this? And not in the “deny the reality of autism” interpretation. I advocate for greater rights. If you feel your children already have sufficient rights, will it hurt them to have more rights? I advocate for more research into many areas.

      I don’t feel the need to be lectured as to the reality of what autism is. I have a prime example in my life. I don’t need to be lectured about what my points are (or are not “at all”).

    • Sullivan November 3, 2011 at 23:32 #

      “We must have had very different experiences. We don’t present our children as objects of pity”

      Could I ask, respectfully, did you really misunderstand what I wrote? Because your comment comes across as a passive-aggressive slam directed at me and my family, since I clearly didn’t say that I’ve used pity politics myself. Nor did I say that you did, if that’s what is driving this. Autism politics (and disability politics as well) has a history of using pity and demeaning the disabled individuals in order to promote a cause.

      “Or to put it in other words, if you are advocating for equal rights for yourself, you had best not try to take away the “rights” that someone else needs at the same time.”

      What does this have to do with the current discussion? Aside from stating the obvious, it comes across as a slam that you think people are attempting to take away someone else’s rights.

  20. Kassiane November 3, 2011 at 22:40 #

    “YOU AREN’T LIKE MY CHILD” has the unspoken “So shut the hell up and listen to me, even though I’m not like my child either”.

    /has been around this way too long.

    And Sullivan, you’d feel threatened by autism parents if you were me too, given that I’ve experienced actual physical violence at the hands of several (not just mine).

    • Sullivan November 3, 2011 at 23:04 #

      And Sullivan, you’d feel threatened by autism parents if you were me too, given that I’ve experienced actual physical violence at the hands of several (not just mine).

      And, yet, Kassiane, you are one of my favorite people for information. You have been one of the people who I can count on for criticism, even strong criticism, with respect.

  21. McD November 3, 2011 at 22:51 #

    I have come across people in our education system who are undermining the efforts of parents to get evidence-based behavior therapy for our kids because it is their ‘right’ to be autistic. They are winning; our education system does not provide ABA, (neither is it covered by medical insurance).

    I think that is the basic issue.

    More ‘rights’ for autistic adults will reduce the ‘rights’ of parents to choose treatments for their children.

    I would really support efforts to protect children from dangerous, unresearched, treatments. But I think you can see the size of the backlash if the bio-med crowd were prevented from experimenting on their kids.

    But my son has learned so much through ABA, from practical daily living skills, to social skills. His frustration and anxiety is gone, he seeks out and engages with other kids. He has gone from non-verbal to above average in literacy and numeracy (still only talks when he feels like it). My son is not ID, although his combined IQ at the start measured at 54, I would guess he would be well within normal range now. He is still very autistic and always will be, but he is a much happier little boy.

    So where do you draw the line?

    Some adult autistic advocates would ban ABA and my son would be exercising his right to poke his eyes and scream until we guessed what he wanted (what he was doing when we started ABA).

    Personally, I think autistic kids have a right to an education tailored to their specific learning needs. If I had had such an education I would have survived university when I first attempted it at age 17. Instead I flunked bigtime and my Dad had me enlist in the Army (the big green sheltered workshop). It took about 16 years to develop the skills I needed to live independantly.

    [as an aside, I am predicting a reduction in the number of us adults with the release of DSM-V, when we will have to stop calling ourselves ‘Aspergians’ and start calling ourselves ‘Level 1 Autistics’]

  22. MJ November 4, 2011 at 00:50 #

    “Because your comment comes across as a passive-aggressive slam directed at me and my family”

    Sorry if it came across that way, that was not my intention. My point was meant to be quite literal – I have not experienced either first hand or second hand families using pity to try and get things for their children. Most of the families I know are fighters and will strongly, uhm, advocate for what their children need.

    The only thing that I have experienced that comes close to what you are describing is parent’s using the phrase “they have autism” to explain some of their children’s more unusual behaviors in public.

    “it comes across as a slam that you think people are attempting to take away someone else’s rights.”

    How about the right to an appropriate, evidence-based treatment for the condition? As I said, there are quite a number of self-advocates against behavioral therapy. So while that wasn’t meant as a “slam” it was meant as description of what I see happening.

    “In your experience, correct? Since you don’t speak for anyone outside your own experience, then you aren’t now?”

    No, by definition. If you don’t think that “autism” is, in large part, a disorder of communication (or social communication if you prefer) then we aren’t talking about the same condition.

  23. Julian Frost November 4, 2011 at 06:06 #

    @MJ:

    Julian Frost, you seem to be forgetting that having a diagnosis of autism is not the same as being a part of a repressed minority.

    You seem to forget that I mentioned the physical disabled. I’d like to point out that in each case, to include the formerly excluded group, society had to make changes and incur certain costs.

    There is a fundamental difference between being a “women” or “non-white” person and having autism.

    There is a fundamental difference between each of those groups. I mentioned them as examples of formerly marginalised groups that had to battle to gain full inclusion.

    So, no, when you advocate, you do not advocate on behalf of what my children need. What you do is minimize and marginalize them – especially when you compare their disability to something like women’s rights.

    So when I advocate I’m marginalizing your children? Horse elbows! I’m lobbying society to change to accommodate all autistic people, not just myself.
    Kassiane is right. You want your children to talk, and autistic adults like me to shut up. Well…
    F^(& THAT $#|*!

  24. Kassiane November 4, 2011 at 07:08 #

    Being autistic is, actually, being part of an oppressed minority. Being any sort of disabled is.

    Just like being a woman, or a PoC, or gay, or trans, or poor, or of a religious minority.

    And Sullivan, I respect you too. But I don’t think you’d hit me/knife me/trap me in a corner and yell at me. That’s more an action of people actually related to me/certain parents at autism conferences.

  25. Clay November 4, 2011 at 10:20 #

    Slightly off-topic, but not really.

    I just saw a great documentary on PBS, “Lives Worth Living”, which is basically about the struggle to pass the ADA. See:
    http://www.pbs.org/independentlens/lives-worth-living/ when you have an hour to spare. Definitely worth watching, and with a little thought, one can see how it’s apropos to this topic.

    Oops, sorry, that link only takes you to a trailer and some short clips, about 10 minutes altogether. Look for it on PBS.

  26. Harold L Doherty November 4, 2011 at 11:25 #

    No I do not feel the need to impose my views on anyone else.

    I claim the right, and acknowledge the responsiblity, to speak on behalf of my son who lacks understanding of this discussion.

    I reject the right of Kassiane, Ari Ne’eman, Michelle Dawson and other strangers with high functioning abilities to speak on behalf of my son because of their personal experiences.

  27. MJ November 4, 2011 at 12:52 #

    “So when I advocate I’m marginalizing your children? Horse elbows! I’m lobbying society to change to accommodate all autistic people, not just myself.”

    But you still seem to be missing the fact that my majority of my children’s problems ARE NOT SOCIETY. You can lobby for every change and accommodation from society in the book and almost none of them will help their problems.

    The fact that you are either unable or unwilling to accept that simple fact is why you cannot advocate for children like mine.

    • Sullivan November 4, 2011 at 21:37 #

      But you still seem to be missing the fact that my majority of my children’s problems ARE NOT SOCIETY. You can lobby for every change and accommodation from society in the book and almost none of them will help their problems.

      But, they will help with a minority of your children’s problems. That is, if I read the above correctly.

      Again, this isn’t an either/or situation. One can work on both areas. Or, one group can work on one area (say society) while another works on other areas, and all benefit. Or people can work on various areas with various degrees of effort.

      What’s wrong with, “You will benefit more from social changes, I will benefit more from changes in both areas. I help you, you help me. We all win.”?

      Or, we could stay with, “Whenever you talk about the needs for your group, you are putting my group down. Therefore I refuse to work with you and will work against your goals”.

      That’s gunna get us far. Right.

  28. passionlessDrone November 4, 2011 at 20:41 #

    Hello friends –

    For my money, MJ’s recent comment hits the nail on the head.

    But you still seem to be missing the fact that my majority of my children’s problems ARE NOT SOCIETY. You can lobby for every change and accommodation from society in the book and almost none of them will help their problems.

    I don’t have the time or energy to worry about the possibility of my son being discriminated against yet, there are much more pressing problems to be addressed first. It is a hierarchy of needs, and I long for the day societies problems are the largest obstacles my son faces.

    Regarding women’s rights and similar movements, this is a poor argument because the biases against women, or black people, were based on invalid ideas, that women, or black people could not do a job as well as a man or a white person. In the case of people like my son, however, the facts on the ground are that he is demonstrably disabled by his autism. His problems aren’t the figment of a racist mindset; they are real and they are the result of his autism and nothing else. While this may not be the case with some adult advocates here, it is the case with my child, and with a great number of children I know.

    Here is an example. For about six months, my son was obsessed with touching the rear tail lights of SUVs. Every parking lot we walked through was a mad house, you had to be on him, physically keeping him from running about in a frenzy of tail light touching. It was incredibly dangerous and on many occasions he had to be dragged into the store/restaurant/school/whatever in the midst of a meltdown because his current favorite activity was cut short or completely disallowed.

    What societal solution addresses this problem? What solution involving ‘full inclusion’ could anyone suggest that would help fix this problem? Should I have lobbied everyone not to drive SUVs? Should I have asked people not to park where I was going to go? Should I have not taken my son out of the house? Was the continuation of everyone to do things that caused my son to put himself in dangerous situations the work of a majority ‘oppressing’ him? (Should I have taught my son that it was OK to ‘say no’ to my request that he not run rampant in parking lots?)

    While I don’t have any particular problem with Mr. Frost’s ideas on achieving inclusion per se, it doesn’t do a lot to help my son with problems like what I described above. Speaking only for myself, the problem isn’t necessarily the idea of inclusion, but the implicit, and sometimes explicit, call that autism shouldn’t be cured that can cause this type of conversation to get tense.

    This is where I’m going to disagree with someone with great vigor; no path of inclusion will help with an intense desire to touch tail lights, or keep my son from constantly having open wounds because he will not let a scab heal, or keep him from touching, or hitting other peoples persons, pets, or children. This has to be addressed with him, by addressing, and dare I say, fixing his autism. There isn’t any other way.

    So advocate for inclusion all the live long day. Go crazy. I’d love to be in a place where I thought this should be prioritized. But I am terrified of the idea that you might convince policy makers to stop looking for a way to solve the very real, and far more critical problems that autism causes.

    – pD

    • Sullivan November 4, 2011 at 21:39 #

      Here is an example. For about six months, my son was obsessed with touching the rear tail lights of SUVs. Every parking lot we walked through was a mad house, you had to be on him, physically keeping him from running about in a frenzy of tail light touching. It was incredibly dangerous and on many occasions he had to be dragged into the store/restaurant/school/whatever in the midst of a meltdown because his current favorite activity was cut short or completely disallowed.

      Would it have harmed your son to have society be more accepting of him during his meltdowns? Would it have helped?

      It isn’t an either/or question. Problems are not one-dimensional.

    • Sullivan November 4, 2011 at 22:31 #

      but the implicit, and sometimes explicit, call that autism shouldn’t be cured that can cause this type of conversation to get tense.

      I agree. I would point out that the idea that autism should or shouldn’t be cured is a theoretical question. While it is an important theoretical question, I don’t see the value in getting a heated conversation over this when there is work to be done.

      I am terrified of the idea that you might convince policy makers to stop looking for a way to solve the very real, and far more critical problems that autism causes

      I agree that there are many critical problems which your family faces. But, there are critical problems faced by adults who spoke out on ASDay as well. We can remain divided, or work together.

      [edit]AThe number of autistics who write have the experience of being a frustrated, nonverbal (or minimally verbal) child. While I don’t know if he participated in ASDay (let’s assume he didn’t), Mr. Stephen Shore is a prime example. Here you have someone who was nonverbal until age 4. If I recall correctly, he was even a case of regressive autism. Those experiences are part of the resources he uses to teach music to autistic children.

      That is not controversial.

      But when someone says, “perhaps parents could benefit from listening to the autistics writing for ASDay”, it *is* controversial.

      As a sidelight to that. I see a lot of “they are so unlike my kid that they have no idea what my kid is going through”

      What I don’t see are people admitting the next logical step, “Therefore, I have no idea what they (adult autistics writing for ASDay) are going through.”

      Perhaps it is arrogance on my part, but I have a feeling that other people may be able to have some understanding of me and my kid and perhaps, I can come to some understanding of them. Note the careful choice of language. I don’t say we will understand eachother, but will be able to come to some level of understanding. Ask any kid, any typical kid, “does your parent understand you”. I doubt you will get “yes” very often. Ask an employee, “does your manager really understand you”, and I bet the fraction of “yes” answers is low. As if they have some level of understanding of what you are going through? Sure.

      One last observation: I doubt many parents who bring experts (psychologists, speech therapists, etc.) into an IEP meeting start out with, “Keep in mind that this SLP isn’t an autistic child, so she has absolutely no understanding of what my kid is going through”.

  29. stanley seigler November 5, 2011 at 19:04 #

    [sullivan say] It isn’t an either/or question. Problems are not one-dimensional.

    for sure, for sure, say the valley girl…so why are too many pro/con discussions made as if a problem/issue is one-dimensional…

    so maybe why, as quoted somewhere on LBRB: “it seems to be a common defect of human minds that tend to crave for complete certainty of belief or disbelief.” (something like that)

    we need to think in at least four dimensions…maybe one day in multiple dimensions…

    stanley seigler

  30. daedalus2u November 6, 2011 at 01:05 #

    To some people, the idea of whether “autism” should be “cured” or not, is completely analogous to the idea of whether “being black” should be “cured” or not, or whether “being female” should be “cured” or not, or whether being “Native American” should be “cured” or not.

    I understand that some people don’t want to think about the idea of “curing” “autism” in the same way as they would think about the idea of “curing” “being black”, or “curing” “being female”, or “curing” being Native American. This is not understanding where some people with autism are coming from.

    If you want to understand someone, you have to be able to perceive and think about things from their perspective. This is a problem that many NTs have, they feel there is only one perspective, the specific NT perspective that they have. This is something about some NTs that does need to be “cured”. Unfortunately, many NTs are completely oblivious that they need to be “cured” of anything.

    “Curing” NTs of the NT feeling that there is only a single NT perspective on things is analogous to what it would take to “cure” people with autism of their autism. It would take a fundamental restructuring of their cognitive processes, which requires a fundamental restructuring of neuroanatomy.

    But with sufficient “education”, people can be taught that they do suffer from something that they need to be “cured” of. For example there are medical treatments even for such things as “being black.”

    http://en.wikipedia.org/wiki/Skin_lightening

    Interestingly, one of the favorite skin lightening compounds is mercury.

    http://www.ncbi.nlm.nih.gov/pubmed/21776243

    Being “female” can be “cured” too, with hormones and even surgery.

    There was a time in the US when Native American children were “cured” of being Native American. If you take children from their native home and foster them in a home of a different culture, they learn the language and culture of the home they are fostered into and not their “native” culture. This is still going on in some places, like in South Dakota where Native American children make up less than 15% of the population but make up more than half of the children in foster care.

    http://www.npr.org/2011/10/31/141872944/improving-foster-care-for-native-american-kids

    Even though it is US law that Native American children don’t need to be “cured” of being Native American, there are people all too willing to try and do so, especially if they can make a profit with their “cures”. How are we going to “cure” those people who think that Native American children need to be “cured” of being Native American?

    Who should we listen to? Those who say “being black” is just fine, or those who say “being black” is a terrible disability that leads to prison, shorter lifespans, increased heart disease, lower incomes and so needs to be “cured”? Maybe we should listen to both and try and understand where both are coming from before we do anything? Maybe people who are black who have not ended up in prison have a few hints as to how that happened short of a “cure”? Maybe they should be listened to?

  31. Julian Frost November 6, 2011 at 11:07 #

    MJ:

    But you still seem to be missing the fact that my majority of my children’s problems ARE NOT SOCIETY. You can lobby for every change and accommodation from society in the book and almost none of them will help their problems.

    No? I can’t lobby society for changes to the education system to make it more accommodating to autistics? I can’t ask Apple to give iPads to autistics at a discount? Yes I can, and those are just two examples of how I can lobby society to make things better for your children.

    The fact that you are either unable or unwilling to accept that simple fact is why you cannot advocate for children like mine.

    The reason I don’t accept that “simple fact” is because it isn’t a fact. It’s just your opinion, and as I showed above with the examples of the iPad and educational changes, it’s incorrect.

  32. Julian Frost November 6, 2011 at 12:08 #

    One last thing MJ. Do not tell me what I am or am not thinking. You are a) dead wrong about me, and b) very insulting.

    • strawman April 15, 2016 at 19:53 #

      Julian, I don’t think MJ meant to insult you. Maybe he just thinks he knows the needs of his children a little better. I for one would be thrilled to have you speak for my child even though he is on the opposite end of the spectrum from you. He loves his iPad, computer and cell phone. I also looked at your website today and noticed you are an IT tech. Keep up the good work!! I just got around to reading these replies and realized they are from 2011. Sheesh

  33. stanley seigler November 6, 2011 at 15:38 #

    [Harold L Doherty Nov 4th] I reject the right of Kassiane, Ari Ne’eman, Michelle Dawson and other strangers with high functioning abilities to speak on behalf of my son because of their personal experiences.

    COMMENT

    have NOT followed this thread closely…but in general feel/believe kassiane, etal, speak only on behalf of those with abilities many on the spectrum dont now have…but may develop.

    i see nothing wrong with this…they should be applauded…perhaps they will have a positive effect on our sick, hypocritical, christian, society.

    stanley seigler

  34. Sunshine December 22, 2011 at 17:02 #

    What “societal changes” are disability advocates actually pushing for? General acceptance might be nice, but this isn’t exactly a right to be won. Nobody has the right to be accepted.

    Self advocates such as Kassianne has said “People with disabilities are oppressed just as women and racial minorities have been oppressed.” Okay. How? How is society oppressing people with disabilities? I think this is a vague, bold statement to make without anything to back it up.

    You do not have the right to be accepted. It’s nice to be accepted. It’s a noble goal to try to persuade people to accept you. But it’s not a right, and you aren’t automatically oppressed if you aren’t accepted.

    I think it’s fair for those who are actually concerned with the future of their children to say, “Hey, the goals of some outspoken self-advocates are questionable at best, and it takes away focus from actual efforts to make disabled people more able bodied.”

  35. Julian Frost December 22, 2011 at 18:34 #

    @Sunshine:

    Self advocates such as Kassianne has said “People with disabilities are oppressed just as women and racial minorities have been oppressed.” Okay. How? How is society oppressing people with disabilities?
    Are you really that freaking ignorant? According to some statistics, less than 20% of adult autistics are gainfully employed. I’ve read that the situation is similar for the blind.

    I think it’s fair for those who are actually concerned with the future of their children to say, “Hey, the goals of some outspoken self-advocates are questionable at best, and it takes away focus from actual efforts to make disabled people more able bodied.”

    Given that a lot of us self-advocates are pushing for things like accomodating autistics, and that in 18 years time those autistic children will be autistic adults, you are talking utter bunkum.

    • Sullivan December 22, 2011 at 18:52 #

      Don’t you just love the use of the term “actually”:

      “…those who are actually concerned with the future of their children…”

      Implies the rest of us aren’t “actually” concerned. We just pretend. Those of you who aren’t parents aren’t “actually concerned with the future” of children.

      Of course it’s “fair” for people to make statements like that. Fair as in “free speech”. But, hey, don’t expect to be accepted for it. It’s not like its your right or anything.

  36. Kassiane December 22, 2011 at 20:35 #

    Firstly, if you are going to make assumptions about me and beat up the straw autistic, SPELL MY DAMN NAME RIGHT.

    You know how there’s less penalty when someone kills someone of a racial minority?

    Even less penalty if you kill a disabled person.

    You know how women have to work 3 times as hard for 2/3 the pay?

    Disabled people who for whatever reason are unable to get jobs in places other than sheltered workshops make criminally low amounts. Those of us who have “mainstream”ish jobs aren’t exactly rolling it in either.

    You know how as a woman there is NOTHING YOU CAN DO to be taken seriously because you are too pretty or not pretty enough or shush sweetie, the menz are talking?

    Yeah. Parents do that to me all the time. YOU do that to me all the time (what do you know about me again? Not even how to spell my name when it’s right in front of you). Only it’s assumptions about my functioning, not comments on my appearence.

    I just love when people assume I don’t care about your kids. I’ve been doing superstressful shit so that your children don’t have to. Oh wait, no, that means “I’m lucky to be able to do XYZ thing that lead to ABC Stressful Lawsuit at all NOT LIKE MY CHILD”.

    If other people treated your kids the way you treat autistic adults, they probably would be a smear on the ground. Hypocrites.

  37. Strawman November 1, 2015 at 16:35 #

    Disabled people who for whatever reason are unable to get jobs in places other than sheltered workshops make criminally low amounts.” Why does it have to be that way? Jobs are just one thing to advocate for. They don’t have to call them “sheltered workshops” There should be places where there is transportation for those who need it. They could have a decent work environment. They could do a job that is best suited for their talents. Since they already get social security disability, the paycheck should be decent enough for living expenses. Dignity and fairness in the workplace is what we hope for. Independence is what we strive for all are children, aspergers, autism nt, and any type of disability. Don’t we all want a good outcome for all people? Why squabble about who will speak for whom? Money raised for charities such as Autism Speaks could make this happen for cities across the country but, alas, they don’t even hire autistics at AS.

    • Strawman April 15, 2016 at 16:20 #

      I have just finished reading the comments on this thread. The argument is who should speak for those who cannot communicate and about disability rights and society acceptance. Those with aspergers should speak and parents should also advocate and non verbal can also speak by their actions. That’s just my opinion. If a person with aspergers disagrees with the use of ABA and thinks that it is abusive even though rewards are an incentive than maybe it is not for them because they possess the ability to pay attention without prompts. If sheltered workshops are objectionable than people with clout such those in charge of funding can think of a better solution for those who need the most help. They cannot be left with nothing to do but pace everyday at home for the rest of their lives. Many have talent for detail and are willing and capable. Whilst reading this thread I also noticed a person JM from the no longer existing website Jabberwocky . He seems to be a good person. A reasonable person who takes the middle ground respectfully. It is too bad that he seemed to be bullied by those on here who are experts in the art of debate. Those who detect fallacies such as ad hoc, straw man, string of pearls, slippery slope etc
      It only goes go show what people are most interested in when the faux documentary Vaxxed drew in 62 comments . Any good parent knows to have their children vaccinated. It takes a certain mindset to be a biomed mom. No one can convince them otherwise even though their child will always have autism. They think their cause In life is to warn about vaccines but I think that cause should be to make sure their child above all else is well educated and has a good life because every life is a gift and not damaged but worthwhile.

      • Chris April 15, 2016 at 19:57 #

        “If sheltered workshops are objectionable than people with clout such those in charge of funding can think of a better solution for those who need the most help. They cannot be left with nothing to do but pace everyday at home for the rest of their lives.”

        There is an email group managed by our local county ARC. Some parents with started to hold meetings to get their children some place to go after they age out of public school.

        Now it is not just autism (and there are some of those), but also kids with severe physical/intellectual challenges like severe cerebral palsy. Plus the ARC is one of the national groups that is advocating closing down the sheltered workshops etc. I just just got this link in my ARC newsletter, I have only seen one episode I will checking it out this weekend:
        http://legacy.king5.com/story/news/local/investigations/2015/12/03/last-institutions/76123472/

        Other plans for the week is to go to an ARC presentation on state resources, and to go the local Social Security office to sign twenty something son up for SSI benefits. I was told by the rehab counselors that they provide supports for employment, as son is presently getting some social/job coaching. This is stuff we need more of, not distractions.

        “They think their cause In life is to warn about vaccines but I think that cause should be to make sure their child above all else is well educated and has a good life because every life is a gift and not damaged but worthwhile.”

        Exactly.

  38. Strawman November 1, 2015 at 19:48 #

    My child attends a school for autism. He started at ave 5 and be is now 18
    He had to have some ABA when he first started. He learned to read somewhat. He is computers, iPad and now he has am iPhone
    He can text mainly one word answers. We call him but mostly he ignores our calls
    He takes good care of his phone
    Mainly he used it to look up YouTube, to see what is playing at the movies or to look up places he has gone to on vacation. His school is teaching life skills. In preparation for job opportunities he has been sent to companies where he must dress business casual
    He has worked putting toys together and sosorted medical instruments
    He has also washed dishes and cleaned bathrooms. We are very proud of him
    He is not asking for a free ride. He cannot speak but he has a good understanding. Whoever would speak for him I hope they a good sense of what challenges that are faced by people with disabilities.

    • Strawman November 1, 2015 at 19:52 #

      Sorry about my errors in spelling and grammar
      I am typing in a hurry on my phone

    • Chris November 1, 2015 at 19:57 #

      I am glad he is receiving services while in high school. I assume you have set up a guardianship for him, and for when you are gone you have set up a special needs trust (we are doing that now).

      Good luck with his future.

Trackbacks/Pingbacks

  1. Autism Blog – Autism parent's listening day « Left Brain/Right Brain | My Autism Site | All About Autism - November 1, 2011

    […] Excerpt from: Autism Blog – Autism parent's listening day « Left Brain/Right Brain […]

  2. Autistics’ Speaking Day: On my voice and identity | autismjungle - November 1, 2015

    […] That I can’t possibly understand or advocate for people who are more autistic than I am. The most egregious example of this was four years ago. MJ, a parent to three girls with autism, bluntly […]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s

%d bloggers like this: