Monsters, Inc.

Last August 22, I wrote a blog describing some lessons learned from autism therapy (2009/08/22/lessons-learned-from-autism-therapy/).  I listed ten common mistakes people make and I include one of them below:

Making the child the “King of the Household.”

A child has a disability, so parents feel sorry for him, letting him get away with bad behavior, and excusing him from acting appropriately.  Congratulations.  You are on your way to creating a monster who becomes the King of the Household.  You might as well start fitting the crown and the throne now.  On the bright side, everyone knows who rules the place.

The point is that people with disabilities, whether they are children or adults, whether their disabilities are physical, cognitive, psychiatric or developmental, should not be pitied.  Unfortunately, many people instinctively pity people with disabilities, treating them differently and letting them get away with anything, to the point that those people with disabilities consciously or unconsciously take advantage of the situation.  Of course people should have reasonable accommodations, or modifications to help them be successful.

What I’m about to say may seem extreme, but I strongly believe it.  If you have the choice of making fun of a person with a disability or pitying him, you should definitely make fun of him.  That’s right – given the choice of ridiculing people with disabilities and pitying them, you should definitely ridicule them.

Of course you’d never be faced with the situation of having to make a choice between pitying someone and making fun of him or her.  But I’m trying to illustrate a point.  I’m not advocating making fun of anyone with a disability.  Of course it’s a bad idea to make fun of anyone.  I’m just making the point that pitying someone with a disability is even worse, because then you’re not holding the person to high standards, for accomplishments or behavior or anything else.  You’re giving them too much slack, and they realize it, and if you give people an inch, they’ll take a mile.

Here’s another way to explain it.  Let’s use a person with a physical disability as an example.  Most people would look at a guy in a wheelchair and pity him.  However, studies have shown that people with disabilities are about as happy as those without disabilities.  They can also be jerks, and if you don’t believe it, then you’re not treating everyone fairly.  There are people who would say, “How can someone in a wheelchair be a jerk?  They’ve gone through so much – it must be so hard for them – it’s understandable for them to be a little rude.  Cut them some slack.”

But that’s exactly the wrong attitude.  That’s patronizing.  So when children grow up with disabilities and you excuse them for all sorts of behavior, as I said in my blog, you’re creating monsters.  And at some point, there’s no turning back.

A perfect example of this is Eric the Midget from the Howard Stern show.  Eric, 34, has Dwarfism, Nevus flammeus nuchae, and Ehlers-Danlos syndrome.  He’s 3 foot 5 and in a wheelchair.  And he’s a completely arrogant jerk.  He never does anything for other people.

It’s a little more complicated for kids with autism, especially if it’s severe, because certain behaviors are often accommodations for the way they experience the world, they can have a hard time handling emotions, and they can be very slow in learning social skills.  I understand that.  From 2007 – http://www.coachmike.net/autism-faq.php#14_rtn:

How do you teach empathy to a child with autism?

It is well known that many children with autism have problems with regulating their emotions. What isn’t as well known is that many children with autism do feel emotions strongly. However, they just don’t have the ability to understand, regulate or express emotions as well as typically developing children. This is all the more reason to work on it. For example, if a tennis player has a backhand that is the least effective part of his or her game, you work on that skill because it’s the one that is needed most – you don’t ignore it because it’s the worst shot.

In other words, if someone is weak at something, you don’t say, “Johnny doesn’t understand how to play, so he can’t do playdates.”  That’s the exact reason that such a child should do playdates – to work on a weakness and make it better.

So you work on those skills.  You don’t use their weaknesses as excuses and then allow the children to scream and then get whatever they want as a result.  That’s rewarding bad behavior.  You wouldn’t let your typical child get away with saying he doesn’t want to learn math, so you shouldn’t let your autistic child do the same thing.

Speaking of parents of kids with disabilities, I’ve noticed that a lot of people sometimes cut parents a little too much slack as well.  It’s ok to say, “It must be so hard to be a parent of a child with autism,” and understand where they’re coming from.  That’s true, but it’s a fine line – I believe some parents will use that inch you give them and turn it into a mile, and frankly, behave badly and inappropriately, as if any of their actions can be justified just because they have a child with autism.

For example, I once witnessed a situation in which a therapist worked for a family for almost a year, doing excellent work.  The therapist recommended an additional person to come in to help teach the child and before long, the new person was there and the person who did the recommending was out.  That kind of reckless, short-term thinking on the part of the parents can’t be good for the child, not to mention the unethical implications.

This might be a good time for me to mention another one from the infamous top ten at (2009/08/22/lessons-learned-from-autism-therapy/).

Therapists are shuffled in and out and there is a lack of continuity.

In some cases, by the time a child is 10, he has been to several different schools, had several different home programs, and had turnover within each program so he has worked with more than 50 teachers and therapists.  It is not good for children to get attached to therapists and then have them taken away from them, because it teaches children that people are dispensable and interchangeable.  It’s also not good for the children psychologically to have people constantly shuffled in and out and taken away from them because they may develop problems in the future related to that.

If you want to hire a handyman to fix your windows, and then a different handyman to do some other jobs around your house, fine.  Every once in a while I hire someone from craigslist to clean my apartment, and it’s rarely the same person.  But it’s different for people who work with kids.  The relationship is important.  By making constant changes you’re teaching your child that people will leave them and you’re implying that your child is just a robot, not a thinking, feeling human being.

The relationship is crucial to learning, though it is intangible and not easily quantifiable.  I know a child with moderately severe autism who remembers people from when he was two years old.  Because I hear the details of those memories every time I see that child.

I’m not being globally critical of parents, I’m just telling it like it is, which is my philosophy.  In fact, three years ago on http://www.coachmike.net/autism-faq.php#7 I wrote that parents know more about autism than anyone else:

Who are the foremost experts on autism?

Parents are the greatest experts on autism. Everyone else is second. This includes, alphabetically: ABA Therapists, DIR Therapists, Occupational Therapists, Medical Doctors, Physical Therapists, Psychiatrists, Psychologists, Scientists, Social Workers, Speech Therapists and others. Parents know more about autism than anyone else and they should be respected by doctors and other professionals accordingly.

So to sum up, you should never pity people with disabilities.  You should hold them to a high standard and have high expectations of them so that they are held accountable.  Understand that they can be jerks.  Again, I use the example of an adult rather than a child, and someone with a physical disability rather than a developmental one to avoid confusion.  But if you don’t realize that people with disabilities can be jackasses then you’re not treating them fairly, or equal with other people.

The same idea applies for children with autism, it’s just that there is a fine line – you have to understand the reasons why they do the things they do, but you also have to understand that they are very capable of learning and shouldn’t get a free pass to do anything because of their disabilities.  The children should not rule the household.  They should be held to a high standard and learn appropriate social skills.

Finally, parents of children with autism or other disabilities shouldn’t be given a free pass to behave inappropriately or recklessly just because they have a tough situation.  They should be held to high standards as well.

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