"Don't judge anyone unless
you've walked in their moccasins one moon......"
If you are a friend or family member that is looking for information on how you
can help I have written a few pointers below that in my opinion
would help. I hope that you find the comments constructive as they are in no way
meant to be insultive or personal criticisms they are just there to help you see
things from your friend or family member's point of view!!!
When you hear the news about the child the worst thing you
could do is back-away from your friends/family members and "leave them alone for
a bit." This may seem like a good idea as they need time and space to come to
terms with the diagnosis, BUT remember they need your help and support
too!!! You don't have to "know" anything about the disorder, (but learning about
the Autistic Spectrum would give you a greater understanding of what the parents
are dealing with!!), you just need to be there and LISTEN to your
friends/family members!!! They may keep going over the same things but this is
because they are going through a lot of emotional turmoil and searching for
answers themselves!! If you are a true friend you will be there to support them
at this time - Believe me a shoulder to cry on is the BEST help you can
give at this time.
Understand that your friends/relatives may not call
around often, this is not because they want to exclude you from their lives but
because of the challenges and stress that the visit would cause!!! Be prepared
to visit them instead!! This can still be a stressful time for the autistic
child if you arrive unannounced so please remember to phone or arrange
with them beforehand when you will be visiting this will reduce the stress and
also give the parents the chance to prepare their child for a disruption in
routine. Routine is very important for an autistic child it is the way that they
create order out of chaos and make sense of the world, things have to happen as
they expect or their world falls apart and they can end up having a stress
tantrum.
Try not to make comparisons with other "normal" children as this
is extremely frustrating to parents and upsetting when people highlight the
differences between their child and someone else's. Resist the temptation to ask
questions about any bizarre behaviour that you may witness instead try and
research this for yourself as again it is upsetting for parents when their
child's shortfalls are pointed out and this behaviour will be due to their
Autism, and the parents may not know why their child does this and will,
therefore, cause the parents much embarrassment.
As the saying goes
"Patience is a virtue" and you will need to have a lot of this when around a
child on the Autistic Spectrum as often the more able and vocal children can be
"in your face" a lot!! this can be rather irritating but it is just part
of their Autism and a patient and caring attitude is called for. This does not
mean that you should let the child "walk all over" you but that you should not
get angry or upset with the child remember they cannot help what they are doing
and are not doing it to be rude, naughty or irritating it is just part of them!!
Remember that Autistic Spectrum Disorder children learn things at a slower pace
than normal and that they make take longer than you would expect for them to
achieve certain goals (i.e. toilet training, staying dry at night as well as by
day, talking etc.) Again these do not need pointing out to the parents
and strategies normally used may not work for these children.
If you are
in a position to baby-sit for your friends/family members then please offer this
to them. This will give them valuable "time-out" which is not only important for
their relationship but also for their sanity!!!! Remember that they may not take
you up on this offer at first (for those of you with children it is a bit like
the first time someone offers to baby-sit for your new-born baby and you're not
sure if you should!!) Tell them the offer is always open anytime they need. This
not only offers them time alone but a reassurance that you are supportive of
them.
Listen CAREFULLY to the information the parents give to you
about their child ...... They really do know what is best for their child even
if you think it isn't!! and any criticism is taken extremely personally. Parents
of any child try to do their best and that is what your friend/relative is
doing!!!
If you have children yourself it may be helpful, (once you have
learnt about what Autism/Autistic Spectrum Disorders are), to teach your
children why their friend, cousin, etc. does not always act in the way they
think they should. Why they have tantrums, why they don't share toys, why they
don't want to play etc. This will teach your children to be more tolerant of and
caring about any child with a disability which has to be a good
thing!!
When speaking to an Autistic child try and keep your language as
simple as possible, speak clearly to them and do not use sarcasm they do not
understand it!!. Please don't speak to them as if they were stupid they
most certainly are not!!! They just need a little longer to respond so try not
to repeat yourself if they don't respond immediately as this confuses them and
they have to start the whole process of processing of the words
again!!
Below are some really annoying things that people have said to us
and although they were only trying to help they really didn't!!!!! These are not
in any specific order and are all as annoying as each other!!!!
"He could be worse!" ....... YOU DON'T SAY!!! but
we had just found out that our child had a life-long disability ( Yes Autistic
Spectrum Disorder is a LIFE-LONG disability!!!) and at this point in time
nothing could have been worse!!!
"You will find ways of
coping" ....... This may seem like a nice thing to say BUT at the
first fragile stages (just after diagnosis) it sounded like a HUGE
criticism that we weren't coping and made us feel like complete
failures.
"You are strong, you'll get through this" .......
Ok so we may have looked strong but that was our "face" we put on when out and
about, underneath we were emotional wrecks!!!! AND get through what
exactly???? Autism is not an illness it is a disability!!!
"But he
looks so 'normal' doesn't he!!" ....... GRRRR We know what our
son looks like it is the way he acts that is VERY different
to 'normal' children!!!!!
"But he talks!" ....... And their
point was????? .... Yep, they thought all Autistic Spectrum Disorder children
were mute!!!
"But he behaves for me!" ...... PLEASE
NEVER SAY THIS!!!! This made us feel like we were to blame for his
behaviour, which was not true!! the reason that he 'behaves' for some people is
because he does not feel 'safe' or 'comfortable' with those people to be
himself. We get the "breakdown" when he is alone with us and all the stress of
having to 'behave' comes tumbling out.
"God, never sent a parent a
child they couldn't cope with." ....... Although I NOW believe
this to be true at the time it felt like God had deserted me or I'd upset him
somehow.
"God knows that you are a caring person so He has sent you
an angel to look after" ....... Believe me in the middle of the night
dealing with a child having a huge tantrum and waking the whole house up
didn't seem like much of an angel!!!
©2003 & Beyond
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