Green choices and red choices. You get to decide.
I was
recently asked by a friend, who teaches social skills to young people with
autism, how we have dealt with inappropriate behavior in our son Monty, now
aged 17. The short answer was “we have
not had to”. The longer answer is more
complex.
First of all,
you have to figure out what kind of “Inappropriate Behavior” is in
question. I consider lots of natural
behavior in autism to be inappropriate - stimming, flapping, scripting, the
obsessive desire for sameness and repetition and an apparent aversion to following
rules and instructions, for some people.
Of course, I
guessed what the immediate question was actually about - sexually inappropriate
behavior, this time in a 12-year-old boy. These issues have been raised in the
comments section of this blog on many occasions.
The underlying
problem is not something that developed at puberty, it is just a consequence of
what has happened (or rather, not happened) in the years since the child was a toddler.
Typical
children learn by being taught by their parents and teachers, but significantly
also by observing others and how they behave.
Even very severely autistic people can be taught basic things, but when it comes to
learning by observation and picking up unspoken rules, they can be completely
lost. They need to be taught basic rules
and those rules have to become instinctive, over 18 years of childhood.
The most
basic inappropriate autistic behavior referred to is undressing in public. When Monty was 3 years old, we were asked to
provide an Assistant in the kindergarten, because he was taking his clothes
off. The teacher did not want the other
kids to use their built-in imitation skills and following suit – we do not live
in Denmark. The idea of stripping off in
public was nipped in the bud, so to speak.
If you go to
the beach in many countries you will see many kids running around naked. If you go to a park in a big German city you
will see office workers, half-naked working on their sun tans, during their
lunch break. The rules of what is
acceptable vary widely, depending on where you live.
You can
teach a person with severe autism from early childhood that you can only remove
your clothes in certain “safe” places.
If you do not do this, then do not be surprised when you, and your
teenage son, get into trouble at school because he took his clothes off in the
classroom and started playing with himself.
This was what happened with the 12-year-old in question.
The worse
thing is that some parents then want to use drugs to halt these “inappropriate
behaviors”, that they have allowed to develop.
Medical Therapy for Inappropriate Sexual Behaviors in a Teen With Autism Spectrum Disorder
Teens with autism spectrum disorder often exhibit
sexual behaviors in public that are disturbing to parents, teachers, and peers.
Some have proposed that such behaviors can be curtailed with hormonal
suppression. There is information on the Internet suggesting that such
medications work, and some reports in the peer-reviewed medical literature
support these claims. Such medications can have serious side effects. In this
paper, we present a case in which parents requested such treatment of their
teenage son with autism spectrum disorder.
The most
basic skill that needs to be taught to a person with severe autism is to follow
the instructions of the supervising adult.
The child is not the boss.
When I take
my son to the dentist, he has to follow her instructions. If he does not follow my instructions, how
can he ever follow those of the dentist?
Our friend, figuring out what to do about the problematic 12-year-old, can see that there is plenty written about the subject, like this presentation from Australia.
SEXUAL BEHAVIOURS OF CONCERN IN YOUNG PEOPLE WITH AUTISM SPECTRUM DISORDERS
My own opinion is that if you treat your child with severe autism in a similar way to his/her siblings you will not go far wrong. Do not soften those rules/expectations. You set very simple rules and apply them consistently.
When it
comes to neurotypical children, different parents apply completely different
rules. This also has consequences, but neurotypical
children are much more resilient to the mistakes of their parents. You can make mistakes and be forgiven later!
With autism,
it is very much a case of you reap what you sow.
There was a
case recently in the US of an autism advocate mother. She wrote how she could not take her adult-sized
son swimming, because her friends with pools no longer want him to visit. Her son had a habit of removing his clothes
and also peeing in people’s gardens.
That might be funny if it was a 3-year-old, but people do not like it in
an adult sized person – that clearly does count as inappropriate behavior. OK, the boy is autistic and so he gets to do
things the way he wants; the mother is not in control of her son’s behavior and
the consequence is no pool parties – no big deal, you might think. Recently, the family’s house caught fire and
the whole family escaped the two-storey building, except for the boy. The mother then goes back into the house and
tries to negotiate with the boy to leave his bedroom and come outside. Unfortunately, what was reportedly heard
outside was the boy shouting “No! No! No!”. The boy, autistic or not, should have
instinctively followed the parent’s instruction, instead the boy and his mother
died in the fire.
In females
with autism, aggressive behavior and indeed seizures can be triggered by
cyclical hormonal changes that do not affect boys. Treating boys to supress their hormones to minimize
inappropriate behavior looks pretty desperate.
It is
fashionable to indulge people with autism and let them express/develop all
kinds of behaviors. It is unfashionable
to take the other path and promote doing your best to fit in with what society
considers as normal. If you look at the
nature that surrounds us, it is driven by evolution and evolution is driven by
adapting to your surroundings. Sulking
about how you do not like your surroundings might get you likes and retweets,
but sets you on a path to extinction.
Inappropriate
Behavior in Autism, or is it Misguided Parenting?
Parents do
need help and that is why my friend is helping to teach their children social
skills. Autistic children do not yet
come with an instruction manual. “Mistakes”, though made with the best of
intentions, will have life-long consequences.
Touching
Others
I was
surprised how many children, even with mild autism, like touching other
people’s hair. A girl in my elder son’s
class used to get very upset by an Aspie boy who kept touching her hair; she felt she had a stalker. The
concept of “personal space” is something you have to teach, even to some Aspies.
Monty also
likes nice hair – pigtails and ponytails in particular. But he was taught that
you have to ask, if you want to touch.
The girls in Monty’s class at school actually seem to like the fact that
he notices and appreciates their hair.
When it comes
to hugging, kissing and hand shaking, conventions are so different among
different nationalities/cultures things get confusing. Some greetings, common
in countries like France, would not go down well in Anglo-Saxon countries.
Be as normal
as possible and avoid cocooning
One reason
people with autism have strange behaviors is they live very protected lives,
often overly protective. If you don’t
get out much, you will not learn how to behave, or navigate the world.
I got asked
can Monty go to the arcade and play on the virtual reality games, the ones with
headsets. I then say yes, why not? Then I get told some parents do not allow it,
because they think it will make their child with autism have seizures.
Monty’s big
brother does competitive shooting. He
wanted to teach Monty how to shoot Grandad’s old army pistol. So, they went to an outdoor range and Monty
showed he could very responsibly shoot the pistol. You wear ear protectors, but it is still
quite a sensory experience. He behaved
totally responsibly and also hit the targets. Monty later told his classmates
at school and they did not believe him.
When Monty
turns 18 next year, big brother will be taking him to his favourite Irish
Pub. My elder son did ask me and I said
that I have no objections - there will be no reason to treat him differently to
any other 18-year-old. It is a rite of passage and fraternal bonding opportunity.
Clearly if
you have untreated severe autism, you are unlikely to be safe at a shooting range
and you may not want a drink at the Irish Pub.
What do the “Experts” in the US tell us?
I did
stumble upon a site in the US giving advice on teaching appropriate greetings
to people with autism.
https://www.infiniteach.com/resources/appropriate-vs-inappropriate-greetings-visual-support/
I actually
thought it was very bad advice.
People with autism
tend to be very literal. The advice
pretty clearly says emotions are bad, do not express them.
This free autism resource focuses on how to make an appropriate greeting. Oftentimes
students with autism learn a routine and stick with it. When the routine is
good - everything is great. But in the case of greetings, a lot of young kids
are met with hugs, kisses, and hand holding. This may be great and nurturing at
2 or 3 years of age, but at 12 and 13 it is not so appropriate anymore.
I thought this was rather sad advice.
I asked my elder son, aged 20, how he greets his
friends - he has them from Azerbaijan to Zimbabwe and, yes, even some from the US. At University in Italy, girls
expect 2 kisses and if you give just one, they will feel cheated. Where we live, girls technically get 3
kisses, but this takes time and 2 is more common.
A boy refusing to greet a girl with a kiss would be seen as
rude.
Hugs are very common, as a key part of the boy-girl
greeting. Monty’s female assistants all
hug him. My elder son experiences everything from a mini-hug to a bear hug,
depending on nationality, Russians being the coldest and Czechs, apparently, the warmest.
Boy-boy greetings often include a pat on the back, “boy hug”.
At weddings where we live, you would expect the boy-boy kiss,
which I find pretty odd. But you have to
bend to the local convention.
With French people, everyone gets a kiss; children even kiss
adult guests they do not know, which can look a bit strange.
When it comes to holding hands, all that matters is whether
both parties are willing. Banning hand-holding
looks like a sure-fire way to repress emotions and create all kinds of future
problems.
Inappropriate Behavior in Aspies
Inappropriate behavior in people with severe autism, or those with intellectual disability (MR/ID), is normally just a public nuisance or embarrassment. In fully verbal people with normal IQ and some autistic traits, there is much more potential for harm to others. People with severe autism or MR/ID do not have the capacity to carry out revenge plots on the public.
Most Aspies do not carry out such actions, but most
non-terrorist mass attacks on the public are, it seems, carried out by people
of normal IQ with an autism diagnosis.
If you doubt this, just read the news.
The young Aspie who is bullied at school, and has no friends,
may dream about setting fire to the school, but does not actually do it. Due the internet, small groups with strange
ideas can nowadays get together and self-reinforce their views. These groups range from the slightly deluded but relatively harmless, like ASAN (Autistic Self Advocacy Network) to the severely deluded and potentially criminal.
As was stated in one very insightful comment in this blog, it is only during early childhood that you can address the behavioral issues and beliefs in people with mild autism. Once they are older, they have fixed their perception of the world and their place in it. The time for social skills training for Aspies is when they are very young, before they endure years of bullying/teasing/exclusion during high school. They may not instinctively have the capacity to find and make friends, but they are perfectly capable of be taught most of these skills. This is not masking, this is learning. These are actually survival skills for life. If your formative years are miserable, that does not set you on a good path to adulthood.
Conclusion
It looks like parents need to invest time consciously
teaching their child with severe autism what behaviors are desirable, including
the when and where part.
If your house is on fire, you follow your parent’s
instructions and get out of the house. Your sensory sensitivities do not
matter, you have to tough it out, like going to the dentist without full sedation.
Not a bad idea to have a fire drill at home, by the way.
If you spend your whole life in one small town you will need
only one set of social rules; if you are a bit more cosmopolitan, you will have
to understand that different cultures have very different social rules and
expectations.
It
looks to me that some “experts” in social skills for severe autism, or MR/ID, are
giving some very bad advice. It is worth
checking what your child is being taught, to see if you actually agree with it.
I
actually think Aspies have the most to benefit from social skills workshops outside
school and coaching inside school, to find their niche in society. If you get diagnosed with mild autism, you
should automatically be enrolled. Such
workshops should be fun and not some kind of conversion therapy.
Most
children with autism want friends, they just don’t always know how to make
them. These are lifelong skills that you do not forget.