There have been many well-meaning people who ended up hurting me
horribly after my son’s diagnosis. They
told me that it was God’s plan or that I must have done something during
pregnancy or that I was overreacting.
There were days when I was honestly surprised I didn’t slug
someone. But I managed to keep control
of my temper and remember that these people who were irritating me to the point
of wanting to scream were actually trying to be comforting. Failing.
But trying.
Definition of Autism:
Let’s begin with a short
explanation about autism. The Diagnostic
and Statistical Manual of Mental Disorders defines a person as having Autism
Spectrum Disorder when they meet the following criteria:
1)
An
impairment in social interaction with at least two of the following
characteristics:
-
marked
impairment in non-verbal behaviours such as eye-to-eye gaze, social
interaction, facial expression, body postures and gestures.
-
failure
to develop peer relationships appropriate to the developmental level.
-
a lack
of spontaneous seeking to share enjoyment, interests or achievements with other
people.
-
a lack
of social or emotional reciprocity.
2)
An
impairment in communication with at least one of the following characteristics:
-
delay in
or lack of spoken language.
-
marked
impairment in ability to initiate or sustain a conversation with others in
individuals with adequate speech.
-
stereotyped
or repetitive use of language or idiosyncratic language.
-
lack of
varied or spontaneous make-believe play or social imitative play appropriate to
developmental level.
3)
Restrictive,
repetitive and stereotyped patterns of behaviour, interests or activities with
at least two of the following characteristics:
-
preoccupation
with one or more stereotyped and restricted patterns of interest that is
abnormal in intensity or focus.
-
apparently
inflexible adherence to specific, nonfunctional routines or rituals.
-
stereotyped
and repetitive motor mannerisms (such as hand or finger flapping)
-
persistent
preoccupation with parts of objects.
That’s a pretty hefty and
technical definition. The Autism Society
of America defines autism as a “complex developmental disability that typically
appears during the first three years of life and is the result of a
neurological disorder that affects the normal functioning of the brain,
impacting development in the areas of social interaction and communication
skills. Both children and adults with
autism typically show difficulties in verbal and non-verbal communication,
social interactions and leisure and play activities.”
What Autism Isn't:
Now for a little discussion
about what autism is not. It is not the
result of a cold and uncaring parent
(the refrigerator mother theory). It is
not the result of overly demanding and perfectionist parents. It is not shyness. It is not the result of a lack of
discipline. Children with autism are not
“bad” children. They are children with a
defined and diagnosed mental disorder who need accommodation and
understanding. It is not the end of all
hopes and dreams. People with autism can
go on to lead happy, productive and independent lives. It takes more work for them to get there, but
it can be done. There are those who
suggest that engineers, scientists and computer specialists share many
characteristics with those with autism and that diagnoses are more common among
those professions. They may be socially
awkward but genuinely enjoy the challenges of work that requires a high degree
of concentration and attention to detail.
People with autism don’t
necessarily have extraordinary talents, such as being able to do complex math
in their heads or play music perfectly after hearing it once. Only a small fraction of people with autism
have what are called savant talents.
Autism doesn’t mean that a person is cold and uncaring. People with autism can form interpersonal
relationships and a great many actually want to do so but are handicapped in
understanding how to proceed. A
diagnosis of autism does not mean that person is automatically dangerous. A small fraction can be violent but often the
motivation is frustration or overstimulation, not criminal intent. You don’t need to worry about a child with
autism playing with your child. He or
she might need some more supervision but they can still be great
playmates. These misconceptions can be
very hurtful and I hope that you’ll avoid passing them on.
The Autism Point of View:
There have been articulate
members of the autism community who have described how they see the world. Some describe every detail competing equally
for attention, an inability to filter out unnecessary information. Thus being out of a strictly controlled
environment can be overwhelming. An apt
metaphor would be to go to a large and popular video arcade and try to have a
quiet conversation with someone across the room. Noises, lights, changes in temperature, the
pressure of clothes and shoes, smells and more all compete for their attention,
distracting them. Others have talked
about the strange pleasure they get from their repetitive rituals or intense
observations. One boy shared that he
remembered how enjoyable and soothing he found waving a piece of string in
front of his eye. He couldn’t explain it
but the emotional result was undeniable.
Some have talked about how physical pressure was able to center them and
distract them from the overwhelming world in general, making them feel more
comfortable in their bodies. Another
common theme is how uncomfortable and distracting it can be to look at people’s
faces, how they can get lost in watching the complex facial changes and
completely lose track of what’s being said.
People with autism often aren’t trying to be difficult or rude, they are
using strategies that help them to cope.
The lack of compassion isolates families with autism. By trying to understand rather than judging,
you can help them to feel more accepted.
Helping the Parents:
The parents are going to need significant help
for themselves and their children and I hope that you will be able to give
it. My advice is to always ask the parents if its okay before asking questions or giving
advice or taking any action on behalf of the children. And then accept it if they say no. Even if you feel that they are making the
worst mistake that it’s possible to make, you need to respect that they are the
parents. It helps if you can respect
that they are dealing with a difficult and unique situation, one that requires
specialized and unusual tools.
Now, everyone has their own
opinions on how children should be raised and if you suspect abuse, then you
certainly should intervene. However,
there are many issues that don’t cross that line. There are often many challenges that parents
are dealing with and they often have to choose which ones they’re going to
tackle. They may decide that teaching a
child to dress him or herself is more important than working on table manners,
for example. They may need to take
extreme precautions to prevent a child from hurting him or herself, such as
locking up the kitchen. There are many
things which these parents have to do which would seem shocking to those who
are not raising children with autism.
When it comes to intervening, my personal litmus test is to ask myself:
do I feel obligated to report this to my local child protective services? If I don’t, then I do my best to respect the
parents’ choices.
When we’re presented with something new, curiousity is a natural
result. We want to understand why and
how this particular event happened. Pestering the parents with questions is not
a good tactic. They are going to be
dealing with overwhelming emotional challenges from the diagnosis. There are many good books on the market and a
huge number of websites. Do your
research yourself if you feel the need.
Once you’ve gained understanding, if you want to discuss the matter with
the parents, ask permission before beginning.
And do try and be delicate. Avoid
challenges or issues of blame.
Generally, the questions I’ve found the least intrusive began with
“Here’s what I’ve read. What do you
think?”
It’s hard to see people we care about in pain. It’s a very human reaction to want to cheer
them up so that they don’t feel so bad anymore.
However, the parents need to go
through whatever anger and grief they’re feeling. In our society, we often reward those who
suppress their emotions and act as if nothing is bothering them. While that’s reassuring for the rest of us,
it’s not healthy for the person who is dealing with the crisis. It makes them feel isolated and guilty on top
of the emotional maelstrom they’re already dealing with. Well-meaning phrases such as “It’s God’s
will” or “The Universe doesn’t give anyone more than they can bear” can actually
feel like a slap in the face rather than a comfort. Dismissing or belittling a parent’s concerns
is just insulting, especially if you yourself do not have any experience in
dealing with autism. The most comforting
gesture I got was from my two best girlfriends.
They came to me and just held me while I cried. They didn’t say anything, they were just
there for me. That meant everything to
me.
Ask the parent outright if they want to talk
about it or if they want to forget about it for awhile.
There were times when I just wanted to go out and forget about being a
special needs parent and just be me.
Distraction is a great blessing.
It’s a reminder that while one very big facet of your life has changed,
the rest of it can and will continue. A
diagnosis of autism is not the end of everything. There were other times when I needed to talk
about my fears for the present and the future with someone who wasn’t also
involved in the situation. Having
someone listen without judging can be a great relief when you’re under stress.
Don’t assume that you’re an expert, even if you have a dozen children of your
own. Raising a child with autism is not
the same as raising any other child. The
ordinary advice given to parents does not necessarily apply. A child with autism who freezes when going
into the dentist office is not necessarily being willful, but may be
overwhelmed by the high pitched noise of the drills and picks. A child with sensory issues is not going to
eat something intolerable to them, no matter how many times it’s
presented. Even the typical “don’t
worry” advice doesn’t always apply. Such
as that children don’t starve if food is available or that you don’t find
twenty year olds in diapers. Children
with oral sensory issues can starve and you can find adults with autism who
were unable to be toilet trained. A
child who bolts away from his or her caregiver cannot be taken camping or to an
outdoor event without intensive supervision.
Trust the parents to know their children and what their limits are.
Ask
what you can do to help. Offering to take the child for a few hours is
great, provided the parents are comfortable with that. But so is offering to help sit down and make PECS
If you are involved with taking care of a child with autism, then you
have to respect the parent’s rules and be
consistent with their boundaries.
Children with autism do best when they have consistent expectations and
requirements. Telling the child that he
or she can skip his or her dinner and have an ice cream treat just this once
can have very long lasting effects. If
the child is on a special diet, respect that.
If the parents have decided that the child has to eat a certain portion
of the meal before they can have a treat, respect that. If the child should be required to put his or
her shoes on themselves, then respect that.
And it can be just as damaging to encourage a child to perform above his
or her level as it is to not require them to reach it. If the child is at the stage of having to
pull his or her pants up themselves after going to the bathroom, making them
tuck their shirt in as well can cause them to become frustrated and give
up. It can take months of patient work
to get the child to a particular stage and it doesn’t take much to derail all
that effort. The parent may seem
needlessly picky to you, but if they’ve asked you to do something a certain way
then you should do your best to do that because you don’t know what the
consequences will be if you don’t. If
you’re not sure what they mean, then ask for clarification. I would always rather get a phone call in the
middle of my evening out than discover my children’s progress has been
unintentionally sabotaged.
I can’t emphasize the importance of consistency enough. While it may seem harmless to you to indulge
the child “just this once,” it can actually have a huge effect on their
progress. There was a study done where rats
were given a food pellet after pressing a lever. Some were given a pellet every time, others
were given one every other time and a third group was given one after a random
number of presses. When the food was
stopped, the first two groups quickly lost interest in pressing the lever. The third group continued to try until
removed from the cages. If a child
receives a reward (be it attention, a toy or some other benefit) for a
particular behaviour every once in awhile, it can become virtually impossible
to change that behaviour.
Be cautious with offering money.
It’s very generous to offer to pay for part or all of a child’s therapy
but it can be a heavy, long-term commitment.
I recommend asking the parents privately if they would accept a
donation. If you only have a set amount
or a set time period in mind, be up front and honest about that. And don’t assume that if you only have a
small amount that it’s not worth it.
Autism therapy is extremely expensive and even buying a box of diapers
or a new set of clothes for a child can be helpful to the family.
Extended family and friends can
go through their own challenges in dealing with a diagnosis of autism. It can be hard for grandparents to understand
that their bright and precious grandchild has a mental disorder. Sometimes you may find yourself feeling
isolated and out of the loop when it comes to information. You may need to take time to explore your own
emotions and reactions but I urge you to avoid putting pressure on the
immediate family. However much you are
coping with, they are the ones who are in the middle of it. They need your support, as much as you can
give. Take the time to find your own
stability so that you can give that help, if you’re willing. Even small things can mean more than you
know.
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