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by Maureen Bennie
 A
Guide for Family and Friends of Parents Who Have Children
With Autism
Knowing what to say or how to help parents who have recently
had a child receive an autism diagnosis can be tricky business.
Emotions are running high for all involved. Do you try and
cheer the parents up? Do you offer your condolences? Are there
right and wrong things to say?
As a mother of two children recently diagnosed with autism,
I can offer some guidance in this matter. Talking with other
parents and knowing what I needed to hear has given me some
ideas of what parents need during this trying time. Yes, you
know your family best but dealing with autism is a unique
situation and requires understanding and patience on your
part.
Grieving
After the diagnosis is received, there is a period of grieving.
Parents grieve for what may never be. Parents feel overwhelmed
at the amount of decisions that must be made immediately in
order to help their child. At this time, offer your support.
Say, "I feel for you. I can't imagine what you must be
going through." Ask how you can be of help. I was very
depressed after my son's diagnosis and needed help looking
after my infant daughter and help with housework. If you are
over at the home, look around and see what needs to be done
and offer to lend a hand. If the dishes are piled up in the
sink, do them. Mow the grass, do the grocery shopping. Parents
in shock don't always know how to ask for help so keep your
eyes open and see what needs to be done.
Do Some Reading
Do some reading about autism so you can better understand
what a parent is dealing with. It's tiring explaining to everyone
why your child acts a certain way. My in-laws have never done
any reading about autism, which makes their visits difficult
because they don't understand why our children behave the
way they do. Having common knowledge with parents gives them
a base in which to discuss issues with you. Everyone is learning
and adjusting to the diagnosis. Let the parents know you are
all in this together.
Don't Bring God Into It
I was raised in a Catholic home and work in a Catholic school.
Some of the phrases I heard were, "God wouldn't give
you what you couldn't handle. God must think you're special."
After my second child was diagnosed, somebody actually said
to me, " God must want you to learn a very special lesson."
My reply was, "I must be pretty stupid since I have to
do it twice." People were trying to be helpful but comments
like these made me feel worse. Nobody knows what God's plan
is for any of us so it's best not to second-guess Him. I experienced
intense feelings of anger towards God when this first happened
to me because I felt having two children with autism wasn't
fair. If you are a religious person, offer a prayer on the
parents' behalf asking God to grant them patience and strength.
The wisdom of autism takes time to be realized. Don't push
God's messages.
Assigning Blame
Where autism could have originated from in the family tree
is not a question one should ask. The research is not conclusive
yet if autism originates genetically or is caused by external
factors. The genetic question is a touchy subject among families,
especially if someone in the family circle is pregnant or
thinking of having children.
Complete strangers have asked me if I have a genetic problem
once they know I have two children with autism. If I knew
the answer to that question I'd be able to help many people.
Don't ask what could be the cause of autism in a family. Accusing
different sides of the family causes hurt feelings. Accept
the autism diagnosis and do your own research if knowing its
origins is important to you.
Patience and Understanding
Understand if the family needs to back out of social
events for awhile. It's nothing personal; there's just a lot
to deal with in the beginning. Depression is common with a
new a diagnosis. Avoid making personal demands at this time.
Our son was diagnosed three weeks before Christmas, which
made for a difficult holiday. What got me through were people
not putting pressure on me. If I felt like leaving a gathering
early, I did. If I cancelled at the last minute, friends understood.
You feel fragile in the beginning and have no idea what may
set you off. One time I left a birthday party crying because
my son was left out of a trip to the park. I've cancelled
going to birthday parties because I know my kids won't handle
the crowds. Be patient with us. We're learning a whole new
way of living.
A Little Kindness Goes A Long Way
Emotionally worn out parents appreciate any kind gesture.
Bring over a meal. Offer to baby-sit to give the parents some
escape time. Send over a good novel or video (nothing emotionally
heart-wrenching). Arrange a lunch date at a favorite restaurant.
Hire a maid service for the family for a couple of weeks.
Spend time with the person.
Keep in touch with the family. If nobody calls, you feel
abandoned. Autism is not a disease; it's a disorder, which
cannot be cured but can often be successfully managed. We
need to keep on living our lives. Surround us with unconditional
love and let us know you'll listen to us. Don't be embarrassed
when we cry out of the blue. Hugs can go a long way on a bad
day.
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