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Reply to Malice and Asperger Syndrome
  • Lixina
    Posts: 289
    I just sent the following to psychologist Digby Tantam, regarding his article http://www.autismuk.com/index%20tatum.htm:

    I am a 19 year old autistic person officially diagnosed with PDD NOS and self-diagnosed with Pathological Demand Avoidance (technically, it was my mom who said I had it - I wasn't sure).

    I've read your article Malice and Asperger Syndrome, and I don't think that is an accurate explanation of PDA. It sounds to me like you are probably describing a different condition instead.

    I am not at all like Alice, Richard, Hugo, Tricia, Amanda, Felicity or the boy who lied to his aunt about his uncle's death. As for your list of TFAS traits:

    * lacking obvious eccentricity and clumsiness - I am slightly clumsy and can fake neurotypical in one-on-one interaction reasonably well, so I fit that.

    * seeming immature - I'm not sure how I seem. I am delayed in self care skills and have separation anxiety, which probably make me seen immature, but I am intensely interested in psychology and medicine and can talk at the same level as a professor in those areas, which probably makes me seem mature. I think I tend to look younger than I am because I don't wear makeup or revealing clothes (both due to tactile sensitivity and lack of interest in appealing to men). I don't tend to ask personal questions of other people or ask to hold their things. I do ask to hold babies or small carryable animals, but many people do so and I have the usual preliminary compliments and questions.

    * conceiling disability - I do try to pass for normal sometimes to avoid bad reactions, but not to the extreme you describe. In fact, I'm quite open about being disabled and will often disclose my autism to strangers!

    * lack of special interest - as mentioned above, I'm fascinated by syndromes. I'm also intensely interested in fantasy, particularly vampires, werewolves and other human-like mythical creatures.

    * long periods of inactivity - I am physically quite inactive, but almost always reading something, writing something, etc. Even when I'm doing nothing, I'm thinking and fantasizing. Watching me, I doubt someone would get the impression that I'm inactive in any area other than physical exercise.

    * repetitive activity is concealed around strangers - I do hide my stims around strangers because I've been bullied a lot. If I trust them to be accepting, I won't hide my stims. If I were seeing a psychologist, I would probably stim openly in front of them, because it's their job to be accepting of that.

    * flying into a rage - this is where the accuracy of the description of PDA for me becomes clear. The vast majority of my meltdowns are because someone is trying to force me to do something and I get scared and stuck in resisting. For example, I'll be getting ready to leave the house in the morning, and my father is getting anxious about time and yells at me to hurry, at which point I get upset and stop getting ready - instead, I interfere with the others getting ready because my father often threatens to leave me behind. We have a long commute every day so there's no way I could make my own way in, and my separation anxiety is worse when I'm upset. And although I'm acting angry, what I am feeling is terror. I only rarely hit people, and never break things. Usually I just yell that they hate me, etc. This is not a voluntary thing - I feel compelled to do that, because I am scared.

    * socially distressing acts initiatiated 'out of the blue' - the only time I ever act that way is when an earlier problem was not sufficiently resolved and I'm still upset about it (but more often in those cases I don't stop acting upset in the first place). In all other cases, there is a clear trigger, which is always either someone else overloading me (by humming, grabbing, etc) and refusing to stop, demands on me given in angry tone or demands I find unfair, or some other perceived attack (eg my parents saying hurtful things about me, or someone lying to me and persisting in the lie when I point it out, etc)

    * poor nonverbal interpretation, poor scores on emotion-matching tests - I have much milder social problems than that. I do fine on emotion-matching tests and am pretty good at reading people's emotions 1:1. But I don't understand social hierarchies and self-made groups, such as who is friends with who, who is popular, etc. I also tend to misinterpret frustration, etc as anger at me, which would not show up in a test because I only react that way in real interactions - a photo of a person can't possibly be a threat to me.

    * trying to wind people up because they are easier to read - this is very much not true for me! I am terrified when others are mad at me, and very upset when others are sad around me. It would make no sense for me to deliberately induce such an unpleasant situation. If I'm scared because I don't know how someone is feeling, I withdraw and try not to be noticed. I don't try to provoke them to attack me or induce sympathetic anguish in me by being upset! I only upset others when I have no choice, because I feel endangered by what they are doing to me or making me do. Even then, I try to fight them off without upsetting them too much. I tend to be passive-aggressive because of this.

    Ettina
  • Lixina
    Posts: 289
    Here's his reply:

    "Dear Ettina
    Thank you for your interesting observations. It is possible that you do not meet the criteria that Elizabeth Newson used.
    Best wishes
    Digby Tantam"

    So he's not willing to consider that his theory might be wrong. No, I must not have PDA.

    Ettina
  • mango69
    Posts: 967
    That's a very short reply!
    I have been in contact with the NAS and they are going to remove the article that Judith Gould and Lorna Wing wrote on the NAS website when they put the new info on about PDA. I also believe that the people he describes as TTOA seems different to the PDA that Elizabeth Newson describes. It was almost as though he took the word manipulative to be synonymous with malicious. I think many of us parents do not see maliciousness in our children, rather as you say anxiety and fear.
    It will be interesting to see what happens in the world of autism when PDA is put in the profile on the website.
    Margo
  • dirtmother
    Posts: 897
    Even the word manipulation is perhaps a barrier to diagnosis. When someone is at their wits end with a child, yes, they may be keen to see it as malice or keen to see it as manipulation, especially when there is a lot of aggressive or destructive behaviour.

    However, it has the potential to sound blameworthy - ie that parents or teachers are being manipulated (and most of us don't like to feel we are capable of being manipulated - it implies stupidity or weakness). It also sounds to have more conscious cognitive input than, as Margo says, is often happening because of *why* people with PDA behave in the way they do ie anxiety.

    That said, using manipulative techniques could be regarded as a level of social *skill* rather than presented as a element of a disorder. The manipulation isn't the disorder. Of course the manipulation may or may not be successful - and let's face it sometimes the avoidance techniques are not that effective as they draw attention to the non-compliance.

    My parents, who have never been in any kind of denial about there being a genuine problem with our child, were very distressed by the term manipulation, and I wonder if there are some parents and professionals who do not pursue this diagnosis, and more importantly, the more effective strategies because of it.
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