Tag Archives: Stimming

Diagnonsense: Blindness and Autism

Today was treatment plan review time again. This inevitabley means that my diagnosis needs to be reviewed too. Last September, this meant a change of diagnosis from dissociative identity disorder and PTSD to borderline personality disorder. I also have a diagnosis of autistic spectrum disorder or Asperger’s depending on which professional you ask. The details of this diagnosis – whether it’s Asperger’s, autism spectrum disorder, or something else along the spectrum entirely -, don’t bother me. What does bother me is the constant questioning about whether I truly am autistic or all my difficulties are normal for someone who is blind.

I have read a fair amount of information on this, and it is true that blind and autistic people display overlapping behaviors. For example, many blind children (but not most adults) flick their fingers in front of their eyes or rock back and forth. These “blindisms” are also common in autistic people. Blind people also can’t use visual cues to communicate. This led my therapist to assume that all blind people are clueless about for example sarcasm used in speech. Generally, it is recommended that the criterion on non-verbal commnication be left out of the equation when deciding whether someone who is blind meets the criteria for an ASD.

I don’t care about this single criterion as it isn’t the only one in the diagnostic manual. What I do care about, is when underlying mechanisms of autism are attributed to all blind people. For example, my therapist said that all blind people have trouble keeping sight of the big picture. This may be so to a certain extent, in that all blind people again miss visual cues, but it isn’t like all blind people have no clue how to generalize daily living skills from the training facility or parental home to the independent living situation. My support worker, who had extensive experience with blind people, told me when I moved into independent living from her training home that I could obviously clean my apartment, as “a bathroom is a bathroom”, etc. To me, it certainly isn’t. Similarly, most blind people beyond early childhood don’t get overwhelmed by noise. This again led to a horrible misunderstanding when I, early in my independent living experienece, had a meltdown over a fire truck driving by.

Now I don’t care what my diagnosis is as long as I get the right support, but this is exactly where questioning my autism diagnosis is problematic. People with only a mobility or sensory impairment cannot get support. They can get a housekeeper, but they can’t get anyone to help them organize their lives or navigate social or practical situations.

A general rule is that, if normal strategies for the blind do not work, there has to be something else going on. I’ve lived in enough facilities for the blind to know my behavior clealry isn’t normal for a blind person. In fact, it was the staff at the training home who first sought an autism evaluation for me. They didn’t seek this for all their clients. In the end, my current therapist also left the diagnosis untouched, but I get sick and tired of constantly having my needs questined. Of course, I know I truly have “preemie syndrome”, a constellation of neurodevelopmental problems commonly associated with premature birth, but this isn’t a formal diagnosis and won’t ever be one.

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Disciplining the Autistic Child

Many autistic people, if not all, exhibit challenging behavior, such as anger, aggression, obsessive-compulsive behaviors and sterotypical (self-stimulatory) behaviors. Whether and how you intervene with these behaviors, depends on their function. Autistic children exhibit normal childhood misbehavior too. For example, they may nag and tantrum when you won’t give them candy, refuse to tidy their room, or be rude. This behavior can be punished in the same ways that you would use for a same-age typical child, such as by time-out, loss of computer or TV time, etc. Take into account that some consequences may not work for your child. For example, an aloof autistic may find time-out comforting, and most autistics do not get non-verbal cues. Therefore, even with an older child, you need to say explicitly that you are disapproving of their behavior. You also need to make sure the autistic child understands what they are punished for. If they are rude, for example, explain what they said that was rude, how they can make amends, and what they need to do differently the next time. When sending a child to their room, onto the naughty chair, etc., make sure they understand when they can come back. I was often sent to my room and stayed there for hours because I didn’t know when it was okay to come back. Don’t tell a child to come back when they “can behave”. Instead, set a specific time or make concrete rules on what they must do to come back.

As I said, whether and how you intervene with your autistic child’s behavior, depends on its function. Often, a function is presumed based on typical chhild development. For example, suppose your child refuses to tidy their room. You assume they are defiant or lazy, but do they know how to tidy their room? Even if you’ve shown them before or they’ve helped, you cannot expect all autistics to know when or how to do their own tidying or cleaning. I remember when I went to live independently out of an independence training home, my support worker told my knew staff that I knew how to clean. I did, but I had no idea where to start in my new apartment. This may in part be due to blindness, but even as I became familiar with my apartment, I still didn’t know how to organize my cleaning.

Then there are those behaviors that are often due to autism, such as sensory overreactivity, self-stim, or meltdowns. Give yoru child a time and place to engage in self-stim or compulsions, of course with the premise that they won’t damage property or harm themself or others. In 2007, when I was diagnosed with autism, my diagnostician told me that I really needed to unlearn to twirl my hair. Indeed, my parents had told me countless times that I needed to stop this behavior. While it is true that it is annoying and distracting to others, autistics need to be allowed their time to stim. Home is where a child should be safe to be themself. When talking about self-stim and how annoying it is when it’s an autistic doing it, I often refer to a lecture I was going to in college prep. Two students were modeliing appropriate and inappropriate communication skills in their filed. One of them was constantly clicking his pen, and I was assuming at first that this was meant to be inappropriate. It wasn’t. My point is, neurotypical people stim too.

When an autistic person becomes aggressive, be it verbally or physically, you need to intervene. However, it is still important to recognize the function of the aggression. For example, if a child constantly screams or hits when there’s loud noise, screaming at them to stop, will make it worse. Time-out in a quiet place where the child can rage away may be the most appropriate intervention. I strongly disagree with locking up an aggressive person in their time-out area unless there is no other way (except for restraint) to get them to stop. Locking the child up should never be used as a threat or for punitive purposes, and I doubt its effectiveness for verbal aggression. That may be my blindness though, as verbal aggression to me is as scary if it happens in the locked room next door. As for restraint (physically holding the child down), that’s only okay if a person is physically aggressive towards people.

One important point I want to make to finish off: be mindful of your own feelings when handling your autistic child. The moment you start feeling powerlessness or feel you’re going to lose your temper, step back. My parents often lost their temper with me, and this usually only made the situation much worse. I won’t say that you can always feel calm when handling your autistic child’s behavior, but strong emotions can be best handled away from your likely already distressed child.