Our group has attracted controversy from amongst Autism activists because we raise questions about the ability of Autistics to parent.

A while ago we received the following comment from “Amanda”. I have decided to lift it out and feature it along with the replies from ASpar members, because it is typical of the way some AS activists attempt to delegitimise the problematic issues raised by the children of AS Parents.  The letter below makes a lot of patronising assumptions, which are quite wrong.

Amanda wrote:

I’m sorry that your mothers weren’t as affectionate and motherly as you would have liked them to be, but I’m sure they all were trying to do the best they could. Maybe it would help if you understood what they were thinking at the time. Here is an article written by a mother with AS Not all parents with autism are “bad”, and it’s very destructive to these parents, myself being one of them, to perpetuate this stereotype. I hope you can all understand where your parents were coming from, forgive them, and get on with your lives.

Amanda  makes the following assumptions, whether disingenuously as a tactic to undermine us, or perhaps reflecting a genuine failure to understand the point of view of others, concommitant with a diagnosis of Asperger’s Syndrome.

Amanda’s assumptions

  1. That we are ignorant of what people with AS are going through while struggling with everyday life.
    “Maybe it would help if you understood what they were thinking…”
    Amanda, we understand very well, and this is a tad patronising. Most of the members of ASpar report that, thanks to the support and information they get,  they actually becoming more accepting, understanding and forgiving of their parents. It is true that some went through so much at the hands of their AS parents that they want nothing more to do with them, and we must respect them. I personally am now very close to my mother, and respect and admire her for how she has survived the lack of understanding she dealt with from all of us, her family, and society. Nevertheless, I expect to be on anti-depressants for the rest of my life as a result of my career as a child carer, the atmosphere of endless intolerable demands from my mother, constant uproar and shame I grew up in.
  2. That we believe all parents with Autism are bad.
    We do not know all parents with Autism. We have not made any suggestions about all parents with Autism. We are simply telling our stories, about our parents. Now the fact that the stories we tell share common features of a standard AS diagnosis, is food for thought.
    We are aware that AS is an umbrella diagnosis, and that some of the people sheltering under that umbrella may not for instance, lack empathy, may not lack the ability to read the social cues their children give them, may not have short fuses, thus subjecting their children to unpredictable violence, may not be compulsive monologuers who drive their children crazy, may not be social avoiders who cut their children off from all social contact, may not be touch sensitive so that they can hug their children, may be able to touch others in a normal way so that their children don’t cringe from their touch,  and so on.
    But there does come a point when we have to ask if a person who self-identifies as AS and has none of the negative features of the disorder, really is entitled to call themselves AS and use this as a platform on which to further their own profiles as activists. We may also wonder how elastic the diagnosis is even if it is made by a professional, when people who appear to have none of the diagnostic characteristics of AS, have managed to get this dx.
  3. That we are whingers who do not get on with our lives!
    How would you know whether we get on with our lives or not, Amanda?
    The reality is that we do not encourage ASpar members to stay in our group forever. Unliks some psychotherapists for instance, we do not have a vested interest in prolonging membership. We find that most of our members are so strengthened simply by being able to tell their stories at last to people who believe them that they find that AT LAST they can drop the bundles they have been carrying with them all their lives, and move on!

Perhaps this is not made clear in what has up till now been a simple retelling of our stories. I hope this is now clear.

Now read the responses of some children of AS parents to the letters , and to Ann Hayward’s website referred to above.

As volunteers, we do not have the resources to run a moderated website. We cannot take responsibility for dealing with the pain and trauma some commentators report. We are so sorry. We do understand the need
but unfortunately we are no longer accepting comments.

18 thoughts on “Controversy

  1. Pingback: Comments from the Internet – My Story

  2. I have a blog on my experiences as the daughter of a mother with Aspergers and have also gotten comments from a few adults with Aspergers who object to my story. One woman insisted that I am ignorant about the condition and that my story is harmful to her and others with ASD. She was dismissive when I replied that “My writing is not based on stereotypes but on my real experience. I do not wish to hurt anyone, and I know that some will find my point of view hurtful. People in my position – the children of someone with Aspergers – have little voice and are often discouraged or attacked for voicing our experience (see threads on Wrong Planet, for example). I hope you can accept that my point of view is valid even if you don’t like it.”

    I get discouraged by these comments and have often stopped posting. It feels like the current views of ASD as neuro-diversity and not a condition that should be cured mean that the story of growing up with an ASD parent should not be spoken. And that is a challenge: should we keep quiet since the story can hurt the people we are talking about?

    • Actually I’m the person who coined the term Neurodiversity, and prefigured the Neurodiversity movement, which came to pass. See or check it out on google. And I have enough Asperger’s traits and enough experience of bullying as a child to wear the label.

      But I never intended my passion for rights for Neurodiverse populations to mean that everything neurodiverse was inherently good! How absurd. I intended Neurodiversity to mean that we need to see more clearly when not just other people’s behaviours but also our own are “hardwired” and respond appropriately. It’s a call for careful observation, acceptance and understanding of difference, but not a call for “anything goes”.

      Neurodiversity is also a call for self-knowledge by Aspies. If you love to bury yourself in abstract thought, if you know you panic easily, have high anxiety levels, and don’t understand the social cues people are giving you, why would you even want to have children? Conversely, if you love being around kids, and know you have no aptitude for mathematics, why wouldn’t you rather be a school teacher, why would you even want to be a Maths Professor? It’s common sense, not some horrible eugenic plot.

  3. In the three years since this confrontation,I have a lot of misgivings. I know one thing, isolation from family is a two edged sword. You’ll have a life of no challenges and confrontations. That calm life is emtpy without them also. I feel sad without them,but I don’t like the way they make me feel with them. That life and all things are about them. That I was invisible to them and my needs. Is there a solution that can make it better, in a family that can tear an empath apart???

    • Please keep this website active, everyone. It is a Godsend! The stories told here have helped me to understand my own childhood which consisted of constantly beating up on myself for being emotionally neglected. Autism has affected four generations of my dad’s family, including his mother, him and his siblings, me and my brother and one of my sons. Parents with autism are not only psychological nightmares to their children, they are also genetically toxic, passing on their disturbing traits to their children and grandchildren.

Comments are closed.