On Consent

There have been several times where I have noticed that children with high-functioning autism have a difficult time stopping what they are doing when someone withdraws their consent.

Let’s say that an autistic child is playing around with another child. Let’s say they are wrestling around, and the autistic child is on top of the other child, and the other child is yelling for him to get off. I have noticed that it usually requires a third party to get the autistic child to stop what they are doing, or for the other child to actually resort to physically pushing him off or even hitting him to get him to stop.

After noticing it in other autistic children, I noticed it in my own son. Daniel doesn’t know when to take “No” for an answer, that when people tell him to stop doing something, he should stop doing it. He doesn’t seem to hear the person refusing or withdrawing their consent. As a consequence, I have been making  a particular effort to help him understand that you always need the other person’s consent if you’re going to do something with them. This may include something as simple as having a conversation, but it may involve play as well. And, when he gets much older, it will definitely have to include sex, to say the least. The last thing anyone wants is for their child to make that mistake.

The good news is that after only two weeks of talking to Daniel about consent and not continuing to do things after he was asked to stop doing them, this morning on the drive to school his sister asked him to stop making some noise he was making, and he actually stopped, saying, “OK. I’ll stop.” I immediately thanked him for doing so.

When I was a child, my mother would often accuse me of being “argumentative and aggravative.” I think to a great extent those two tendencies–which I have found to be not uncommon among autistics–are part of that issue of consent. Someone who is aggravating another is continuing to do what they are doing beyond the point where the person has asked the person to stop. The one doing the aggravating may not stop because they are trying to annoy the other on purpose, or they may not stop because the request just isn’t registering properly. If it’s the latter case, you can teach the person that when people ask you to stop, the rule is that you stop.

There are perhaps few lessons as important as this one to teach, whether your child is autistic or not.

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Sharing a Co-Morbidity Doesn’t Mean Autism Doesn’t Exist

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My wife shared this image on Facebook. The things surrounding “autism” are all things that can be co-morbid with it. For example, I have general anxiety disorder–meaning I have anxiety all day every day–but I don’t have Tourette’s. Not everyone who has general anxiety disorder has autism, of course, but if you are autistic, you have general anxiety disorder. And not everyone with Tourette’s is autistic, but a higher percentage of autistics have Tourette’s.
 
There are those who think that having daily rituals is having OCD. Having rituals is not really quite OCD. Rituals are a way to create order in life, and is therefore something you will find autistics doing at much higher rates than, again, the non-autistic population. True OCD would involve someone who cannot leave a room without turning the light switch on and off exactly 15 times each time, or who gets “fascinated” by a shoe for 30 minutes straight. Or it may involve being unable to stop thinking about something all the time–such as sharks, for example, or in my case, self-organizing scale free network processes. The benefit of having what one could call “OCD thinking” is that one can become a scientists or scholar, and then you’re actually paid for what you can’t stop thinking about. You can get a Ph.D. with that way of thinking.
 
Of course, if you’re always thinking about certain things, if your brain is always running at 150 mph, you may have a hard time paying attention. My own hyperactivity is mostly in my thoughts, but Daniel has a hard time sitting still unless he’s involved in his obsessions. Which simply means his hyperactivity is internalized.
 
These things themselves come from the fact that the autistic brain is dominated by positive feedback. Complex systems like the brain have a combination of positive and negative feedback. Negative feedback helps to keep things in equilibrium. The thermostat for your heater/AC uses negative feedback to keep the temperature the same. If you had a positive feedback thermostat, the hotter the room became, the hotter the heater would try to make the room. Things go faster the faster they go. Hyperactivity then occurs because you’re getting overstimulated. This can then push over into a situation where you become overwhelmed by the situation. Reactions to this can include extreme escape behaviors, banging your body against a wall while becoming non-responsive, or having an outright meltdown where you cannot control your actions. The overstimulation occurs in no small part because we also have sensory integration disorder. That means we have a hard time separating out visual input from sound from touch from all of the rest of our sensory input. I experience it as a feeling that my mind is being crumpled up like a piece of paper and everything goes black.
 
I also come with some extreme sensitivities. I cannot stand to have my wrists touched. I jump every time someone does that. I want to remove my skin to get away. But I try to downplay my reactions because people will just think it’s “weird.”
 
Autism is a fundamental structural difference in the way the brain is wired and works. It results in a very distinct set of behaviors. Yet, it is a spectrum, and that spectrum goes from truly debilitating (what is now called Autism 3) through “high-functioning” (Autism 2) to Asperger’s/Autism 1 and, I would argue, ADD/ADHD. Yes, most of the elements which are often co-morbid with autism can be found elsewhere. I have a slight tendency toward manic-depression, but there are certainly people with manic-depression who aren’t autistic, and there are people with crippling depression who aren’t autistic. Yet, those are found among autistics at much higher rates.
 
Those who like to throw around the argument that “autism” is a “mere label” are really just trying to downplay some very concrete elements of reality. There are some things that are “mere labels,” and some things that absolutely are not. Having structural and biochemical differences in my brain that result in my mind being very different from non-autistic people isn’t a label. It’s an acknowledgement of that reality. I’ve enjoyed the giftedness and even the OCD that has come with it. I couldn’t have gotten my Ph.D. without it. And yet, my sensitivities and “weird” behaviors have definitely affected various aspects of my life. One of the best things to have happened to me was for me to realize I was autistic and to get officially diagnosed. It cleared up why I was argumentative (have ODD), why I couldn’t understand why everyone else wasn’t as rational or couldn’t see all the complex patterns I could see. It cleared up why I have all my sensitivities, why I think the way I do, why I avoid being in the middle of large groups of people, why I have blackout and movement seizures, why I have a delay in my response to people, and why I can get confused if people don’t give me the processing time I need.
 
The benefit of knowing I am autistic goes beyond that. Now I’m no longer just that weird person who doesn’t like to socialize who inexplicably alternates between being wonderfully kind and friendly to appearing to be rude (from failing to notice things going on or being confused about a given situation). Those behaviors are now able to be explained. Which doesn’t mean I shouldn’t have someone say, “Hey, so and so said hi to you.” I do. It helps. Nor does it mean I shouldn’t have certain behaviors pointed out to me, because when they are, I become more conscious of them and the fact that they may make non-autistic people uncomfortable, so I should try to change that behavior. At the same time, there’s always a degree to which we cannot help our behaviors. In a room full of autistic people like me, the non-autistics would stand out and it would be their behavior which would seem out of place. And if we insisted they fit in, they would seem socially awkward and would have an extremely difficult time fitting in.
 
The long and short of it is that autism is a real thing with real behavioral and cognitive differences in those of us who have it. It’s important people know Daniel is autistic. That way people can understand that if he’s in a situation with a lot of people where he’s being completely overwhelmed that he’s not an out-of-control brat who just need some strong discipline to straighten him up, but actually cannot integrate what is going on, positive feedback is dominating, and he’s so completely overwhelmed he shuts down until he resets (in a closed system like the brain, positive feedback doesn’t run away forever, but rather creates cycles). I want people to understand that. I want people to adjust their expectation and to make room for “odd” behaviors so they can reap the benefits of our existence.

Oppositional-Defiance Disorder, ADHD, and Autism

Anyone who has a child with ADHD should read Diane M. Kennedy’s The ADHD /Autism Connection. This is perhaps especially true if your child has been diagnosed with both ADHD and ODD (Oppositional-Defiance Disorder), since if you combine the behaviors of ADHD and ODD, you get the behaviors of someone with Asperger’s.

Of those with ADHD, 50-65% are also diagnosed with ODD. This would mean that if 3-7% of children have ADHD, and about half of those have ODD, and if children with that combination really have Asperger’s, then around 4%of the general population (including those officially diagnosed with Asperger’s) have Asperger’s.

For those not familiar with ODD, Kennedy lists the behaviors as “stubbornness, defiance, arguing, ignoring rules, hostile behaviors, temper tantrums, and an unwillingness to compromise” (55).

She also quotes the DSM-IV-TR as defining ODD as

a recurrent pattern of negative, defiant, disobedient and hostile behavior toward authority figures that persists for at least 6 months and is characterized  by the frequent occurrence of at least four of the following behaviors: losing temper . . . arguing with adults . . . actively defying or refusing to comply with the requests or rules of adults . . . deliberately doing things that will annoy other people . . . being touchy or easily annoyed by others . . . being angry and resentful . . . or being spiteful or vindictive. (cit. pg. 55)

Let’s face it. I’ve been accused of being stubborn, my parents complained that I was always argumentative and that I liked to aggravate people, and I’m easily annoyed by what I perceived to be peoples’ endless idiocies. I fight against being angry and resentful. Fortunately, I have never been spiteful or vindictive. But given the fact that I exhibit all the rest, I would be diagnosed as having ODD — except that I have Asperger’s, and these behaviors are already included in my syndrome.

Kennedy also cites Lorna Wing on the ways we with autism use language, with Wing saying we have a “tendency to talk on . . . or to ask repetitive questions regardless of the answers, or most irritating of all, to engage in arguments that are endless because the child always finds a new objection to whatever is suggested” (cit. 50). Kennedy also points out that these are typical of children with ADHD as well.

Now, I want you to think about some of the things listed. What kind of world would be live in if we didn’t have people who questioned authority, argued, defied rules, asked repetitive questions, and always found new objections to whatever answers are given? This sounds like the definition of every philosopher, entrepreneur, inventor, scientist, and artist who ever existed. Meaning, these “irritating” features are what are necessary for there to have been any kinds of advancements beyond that of the chimpanzee troopes.

So we again see a list of traits that are presented as negative, but are in fact positive from a social standpoint, since without them there could not have been complex human societies. To have complex order, you have to have not just order, but a little bit of disorder as well.