Not a Problem

Today I completed a questionnaire for a Psychology student at my local university. I missed the part where she’s actually doing a Masters in ABA.

I am not happy. This is going to be a very long post. You have been warned.

One of the first questions is “what educational intervention is your child currently receiving?”

The options are ABA, Eclectic (a mix of ABA, OT, SLT etc) and Other. There is no option for “None”.

So, immediately parents come to the conclusion that their autistic child must receive “educational intervention” and that ABA is an acceptable option. It then asks how many hours a week your child receives. I obviously picked “Other” and under hours I wrote “none”.

It then asks about co-morbid conditions including medical conditions. Fair enough.

But then the actual survey starts. For each of the following questions in this part of the survey, you have to pick one of the following options:

  • Not a problem or impairment; not at all
  • Mild problem or impairment
  • Severe problem or impairment
  • Does not apply or don’t know
  • Then follows a list of things that are considered “problems” by the researcher. Some of these can be problems, I suppose, like pica (eating non-food items) or poor weight gain. But most of them are simply not. For each of these, I picked the option “Not a problem”. Which, is not the same as “not at all” despite how the questionnaire portrays it. My kids do a lot of these things, sometimes they do them a lot. But they are not problems. They are natural autistic responses. I’m going to go through each questionable question in this section and write (in italics) why the behaviour is not a problem, and not something that should be pathologised as such.
  • “Easily becomes upset” Define “easily”. Compared to who? Non-autistic children? Maybe they have every reason to be upset. Just because a non-autistic person doesn’t get upset by something doesn’t mean the autistic who does is upset “easily”.
  • “Eats too much” Define “too much”. Maybe they are eating just the right amount for them. Not only is this arbitrary it’s also fat-shaming.
  • “Crying” WTF? So, crying is now a problem? Crying is a basic human response. It would be a problem, perhaps, if somebody never cried at all. Ridiculous.
  • “Will only eat certain foods” I suppose this might maybe be a problem if it were extreme. But it’s also perfectly normal and common for autistic people, and easy to accommodate if you want to.
  • “Fear of being around others in school, at home, and in social situations” Hmmm. Maybe the fear is justified. The fear response is not the problem. The other people are.

    “Sudden, rapid, repetitive movements or vocalisations that are not associated with a physical disability (such as Cerebral Palsy)” This is Stimming. Fucking hell. This kind of stimming is not a goddamn problem.

    “Weight gain” Fuck this fat-phobia. There is nothing wrong with gaining weight.

    “Engages in repetitive behaviours (eg ordering objects, hand-wringing, hand washing etc) for no apparent reason or to reduce stress” No apparent reason. There’s always a reason. Always. And a coping mechanism to reduce stress is not a problem. The stress is the problem.

    “Compliance with demands” What kinds of demands? Are they reasonable demands? Reasonable according to autistic standards that is. Non-compliance is not a problem. But ABAers love compliance.

    “Spiteful, vindictive, revengeful, or wanting to get back at others” If someone hurts me, I want to get back at them. This is a normal human reaction. If a non-autistic white man feels this way, they make a movie glorifying it starring Liam Neeson. Also, “spiteful” and “vindictive” are value judgements and may not be the motivation behind the behaviours.

    “Withdraws or removes him/herself from social situations” This is actually a really clever thing to do when social situations become too much. It’s a coping mechanism and not a problem.

    “Avoids specific situations, people or events” Again, a good coping mechanism if you’ve learnt from previous occasions that these things are bad for you.

    “Tearful or weepy” Again, WTF?! What is wrong with either or those things. Maybe you’re, you know, sad?

    “Avoids specific objects, people, or situations causing inter fence with his/her normal routine” Again, maybe these things are harmful to them and more than worth messing up your routine by avoiding them.

    “Engages in behaviours that impair daily routine or activities” Why are behaviour therapists so hung up on routine? And then they complain that we are too rigid in our routines.

    “Easily becomes angry” Again define “easily”. Plus anger can be a good thing. Stop making our emotions out to be problems.

    “Checking on play objects excessively.” Define “excessively”. I guarantee it’s not excessive. It’s just the right amount of times.

    “Tantrums” This one nearly caused me to have a tantrum. And by tantrum I mean meltdown. Because there was no mention of meltdowns in any of the survey. How can someone conducting a survey about autistic children mention tantrums and not meltdowns? Do they even know the difference? Fuck this.

    “Fidgets or squirms” Again, this is not a problem behaviour. It is perfectly fucking fine.

    “Persistent or recurring impulses that interfere with activities (eg impulse to shout)” Right now I have a recurring impulse to scream. It’s a perfectly legitimate impulse when faced with this bullshit.

    “Irritable mood”. This study has put me in an irritable mood.

    “Excessive worry or concern” Again with the “excessive”. Only the child themselves know whether or not their worry or concern is excessive.

    “Sudden, rapid, repetitive movement or vocalisation that occurs for no apparent reason.” Fuck you. Don’t you dare say that there is no apparent reason for stimming. And don’t you dare suggest stimming is a problem.

    “Eats too quickly” Again with the judgments about our eating.

    “Blurts our comments or words at inappropriate times” Inappropriate for whom? Stop defining what’s appropriate and what’s not based on non-autistic expectations.

    The study then moved onto looking at past and present autistic behaviours of the child’s. Then sleep, health and happiness of the parent. I’m not going to dissect those as I can’t be bothered. I’m also not going to dissect the last section, beyond saying it’s bullshit. It asks you to keep your autistic child in mind when answering, then asks leading questions that are more to do with being a parent, of any child of any neurology. Such as “I feel trapped by my responsibilities as a parent” and “Since having this child I have been unable to do new and different things”.

    There is a lot more in this survey that upsets me but I feel that’s enough for today.

    This survey feeds into the Martyr Parent narrative, which is then used to justify the use of ABA.

    Is it any wonder I am angry?

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