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Tuesday, February 4, 2014

When The Thinking Stops.

I used to be a fan of the popular internet site Thinking Person's Guide To Autism. I even contributed a couple of pieces to their page some time back, but I can no longer follow nor recommend their site as a source of support or information, here's why. Leaving aside the arrogance implicit in the 'Thinking Persons' title, their original intention from my understanding has been to provide a forum where facts get separated out from the very many fictions surrounding autism. Over time the page has evolved with a strong emphasis on autistic voices being heard and respected. Validation for the lived experience of autistics was made paramount. All good so far? Sort of. Until you understand how they made some rooky mistakes, yet fail to date to learn from them. There's many contemporary examples I could cite but for me it all started to spiral downward with the well intentioned yet poorly executed 'Dialogues'. If you weren't around back then, they start at the link below and continue on for many posts after. Be sure to read the introduction to get some context.

http://www.thinkingautismguide.com/2011/09/self-advocateparent-dialogues-day-one.html

There is no denying the editors of TPGTA are an intelligent, passionate and well intentioned group. The philosophy underpinning their site is a very good one. However what they failed to consider, and continue to do so, is the community of people they interact with and moderate will be a broad mix with many as a result of their autism or other neurological, emotional and psychological issues coming with unresolved pain and trauma. While the editors are well qualified to deal with the known facts of autism science and advocacy they are ill equipped to sensitively manage the emotional realities and complexities our community brings to the table. They apparently have a limited grasp on mental health issues, and this ignorance leads to a lot of non thinking.

The most pressing and obvious example in recent times has been their response to the awful deaths of autistic people at the hands of their mothers. Anyone who dared suggest they have sympathy for the level of hopeless desperation those parents apparently reached are referred to as "apologists" for the murdering parent. According to this theory, any parent who understands the terrible low psychological point that leads to suicide/homicide seeming like a reasonable option, is suggesting what the parent did was OK. Guilty by empathy. See below for a recent example by TPGTA's most active editor/moderator.

http://www.squidalicious.com/2013/09/on-autism-murder-apologists.html?m=1

This idea pushed on TPGTA, that negative perspectives of autism are the problem in these cases illuminates the ignorance of their position. When the child who is murdered is in their teens or twenties, as is often the case, it isn't an inability to cope with the diagnosis, rather one can assume most of these parents have known for many years of their child's autism, so there's other factors clearly at play here. The next part to this process in considering why these acts occur is where the schism kicks in. There are those who say it doesn't matter why, it's never OK and refuse to engage any further with the exploration of reasons for these tragedies. Then there's the rest of us who want to know and understand in an effort to consider ways to avoid further deaths. Then there's some others who feel deep empathy and understanding as they've been in that dark place too. They've plunged into hopelessness, often after having lived with chronic stress leading to exhausted coping mechanisms. They understand profoundly what might cause a parent to make such a terrible decision.

Furthermore there is a gender perspective worth noting. The overwhelming majority of parents who murder their autistic children are mothers.  Women are no more likely to commit fillicide after the first year of a child's life, which either means mothers of autistic children are more murderous at heart, or the complexity and burden of being a primary, and often solitary caregiver, which we know is the case in many situations, is a risk factor. Why aren't the people at TPGTA jumping up and down in anger at fathers who failed to see how poorly the other parent was coping and anticipate the need for intervention? 

So how exactly do the good folk at TPGTA think they are helping to prevent further tragedies? Given these murders are unlikely to occur due to lack of social acceptance but more likely carer burnout what should the thinking person do if they really want to prevent more? I'd have thought they would want to hear from parents who have been in that pit of despair, to ask them what drove them to that point, and what helped pull them out? You know, to actually talk and think about this issue. But that's not the case, in fact TPGTA closes ranks when someone dares to think and question beyond the 'autism acceptance' mantra. If someone claims to understand that desperately awful mental and emotional space it's dismissed as apologist. Knowledge that person could provide is derided, incidentally preventing any real dialogue that might allow people to reach out for help The "we must condemn these parents" chant may actually add to the sense of social isolation and stress many already feel. Those vulnerable people sure as hell won't turn to the lynch mob for support will they?  The inability to comprehend this shows an astounding lack of thought to me. And it is no place for parents who are struggling, or parents of newly diagnosed children who are still working through their shock and grief.

The one thing parents need post diagnosis is a place that helps separate out good information from all the bollocks. I believe TPGTA is no longer one of those sites and it's a damn shame.

*If you are reading this and currently struggling to cope feel free to message me at revive@iinet.net.au or if in Australia contact Lifeline at http://www.lifeline.org.au.

17 comments:

  1. You are one of the few people qualified to comment on such things as I believe you have the expertise to counsel anyone affected by a potential trigger.
    But I will say this, outside of the US and perhaps UK (and other non English speaking countries whose social media I can't read) we have no way of experiencing the level of prejudice experienced by people with disabilities. Hate crime is alarmingly common and a persons right to live equally and be a burden on a system is regularly questioned. There is also the overwhelming dominance if a single charity that uses negativity and despair to raise millions of dollars, without being cognoscent of the effect on the families of the diagnosed.
    I think some people, and I saw this in the Lois Theroux doco, become so influenced by the negative narrative that they can't see positives. And these negative people look for support.
    The mistake TPGA makes is that they oppose this without acknowledging the hopeless mental state of the perpetrators. I see these murders as an extension of suicide. And as such, I refuse to agree it was ever justified, but I see how that person sought and probably found online a community of people who feel that life is just as hopeless as they believe it is. They don't google "crisis support" they read all the empathetic comments in a blog which might even deride a child killer, and say to themselves, "I'm doing what others do" - and as I say so often, the Internet is no place to discuss Trigger topics as you cannot moderate the response , whatever position you have argued.
    There is always an alternative to taking a life. Arguing without empathy for the despairing doesn't help. But saying "I understand why this person did it (therefore you can conclude it's okay for you by implication) is also not okay. I'm speaking from an experience of feeling absolute despair for my son's behaviour (but having the resilience and resources to get help) and from knowing how it feels when someone decides they can't live anymore.
    My sister left this world because she thought it would be better for her son without her. I've finally forgiven her, but I will never ever agree with her. If she had taken her son too, I would never forgive her.

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    1. Thanks for your thoughts on this Lisamaree. You know Im no fan of catastrophic narratives around autism. Ive blogged here about my concerns re. Autism Speaks recently. There is always an alternative to taking a life, just like there's always an alternative to suicide, but those who commit both acts don't see this in that moment. As you say, you had the resilience to reach out for help. Resilience isn't the same for all, and it also isn't endless. Coping mechanisms get worn down in situations of chronic stress. I think we need to talk about this.
      I'm glad you've found a space in your heart to forgive your sister, and Im so sorry you had to. xx

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  2. Thank you, Sharon Morris for your words. Unthinking shame is an outdated control system and we are people of action and science. Ask the hard questions, solve the problem at the root, and save the families.

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  3. Yup... Yes. I think the biggest problem I have with TPGA is that it misrepresents itself. Moderating their own space; making a space friendly to some users while a bit hostile to others is not unlike the dynamics of other cause groups... but they don't represent themselves as a cause group. They represent themselves as a good, unbiased, fact-based, science-based first resource for people who are seeking information about autism. That's jacked up.

    Um. Suicide is just one of the many, many, many things in life that most people tend to have an opinion on despite having very little first person experience with real suicidal ideation and suicide attempts. While I have an opinion on the mean-spiritedness of just refusing to try to empathize with someone one just can't understand, I'm just stunned by the hypocrisy of the message here: "We don't know; we don't get it; we can't put ourselves in their shoes; so we will assume the worst narrative possible." Whatever.

    They piss me off. I'm just gonna say. I think their attitude of entitlement and victimization, coupled with their INSISTENCE on being a role model in the autism community, is gonna mess a lot of lives up.

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  4. This sort of unthinking attitude and disregard of what autism can do to caretakers isn't new. The people involved with TPGTA have been expressing similar attitudes for years upon years. Here is the same person three years ago doing the exact same thing and you are talking about now -

    http://www.squidalicious.com/2011/12/vanquish-forces-of-autism-evil-declare.html

    To quote a line from a tv show - All this has happened before. All this will happen again.

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    1. Hi MJ,
      Thanks for stopping by. You're right that it isn't new.

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  5. Take a look at Shannon Rosa's latest post on her trip to the UK to present at a NAS conference. She found the culture of Autism acceptance very noticeably different from the US. Maybe we need to experience the background of hate that (according to her) exists in the US to understand the Thinking Person's bias. She based it on the Universal Healthcare system which exists in the UK - apparently this means it's okay to be Autistic?
    I can only imagine how she would find it in Ireland where everyone knows someone with Autism.

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    1. There is no "background of hate" that exists in the U.S.

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    2. Perhaps what's stronger in the US is not a "hatred" of autism in the US but a far more vocal and militant group of self advocates? I don't know of any other country that has a group with the culture of ASAN.

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    3. Also, the reaction against Autism Speaks should probably be considered. Most countries don't have anything like that org either.

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    4. The self advocate and related movements in the U.S. are certainly very rigid in their views and hostile towards parents who don't follow the party line. I am always amazed that people who are pushing for their "differences" to be accepted are so unwilling to tolerate other peoples's difference of opinion.

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    5. MJ do you think the hostility from some self advocates may be fuelled by Autism Speaks having so much prominence?

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    6. I think there is some hostility because of the fact that Autism Speaks enjoys a broad base of support from autism families and the general public. But you have to ask yourself why AS gets the support while the self advocates typically don't. I don't think it is because the people supporting AS are ignorant of the issues involved. In my experience people talk a lot but will only put time, effort, and/or money into causes that they actually support.

      Although I have to wonder why hostility towards what Autism Speak's message has to translate into hostility towards individual parents. AS is not the same thing as parents and not every parent likes Autism Speaks. I don't particularly care for the self-advocate message because they typically dismiss my children's problems and their advocacy makes sets up ideals of autism that my children can't live up to. But I am not normally openly hostile to individual self-advocates until they are hostile towards me.

      Unfortunately the hostility towards parents like me seems to be the norm for self-advocates.

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  6. There is always another choice but a person whose perspective has been eroded by lack of sleep may not see the other choices. There may be a connection between sleep deprivation and psychosis. Somewhere in another discussion this needs to be talked about. http://www.theatlantic.com/health/archive/2013/12/how-sleep-deprivation-decays-the-mind-and-body/282395/

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    1. Yes Dixie. It's always about context xx

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