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How to pronounce Marti Leimbach: lime-bark
Marti Leimbach, author of Daniel Isn't Talking, talks about her own family's experience with an autistic son, and the approach she follows to help him - Applied Behavioral Analysis.
Daniel Isn't Talking is taken very much from your own life. How
much do you have in common with the mother in the book?
I went through a very similar experience to that of Melanie, who is the mother
of an autistic boy in the novel. For example, I was certain there was something
wrong with my child for quite some time before the actual diagnosis, and yet
nobody seemed to believe me. I began to think that there was something wrong
with me as I was so anxious all the time. Eventually, we discovered that our son
was autistic. That did not ease my anxiety, of course, but at least it made me
understand that I wasn't going crazy. And at last I was able to focus on the
problem at hand, however awful that problem was. All this went directly into
Daniel Isn't Talking.
What was that like, the pre-diagnosis time?
In some ways, I look back on the years before the diagnosis as a kind of dreamy
idyllic space in my life. Nobody could have been happier than I was driving the
children to farm parks, listening to Peter Pan on the CD player and singing,
"I
can fly, I can fly!" I was that besotted by motherhood. But then, things started
going wrong. Our son was ill very often: ear infections, swollen glands in his
neck, sore throats and vague diagnosis days. I couldn't get a handle on what was
really going on. Things started to unravel, and then they started to go badly
wrong. By the time he was three I knew he was autistic. I brought him in for
diagnosis knowing the outcome already. Still, I was desperate for the doctors to
contradict me, to say he was normal. I almost pleaded with them to say as much.
But instead I was met with sentiments like, "He may never talk" and "He will
need to go to a special needs nursery right away." It was a terrible moment in
my life.
So the boy in Daniel Isn't Talking, Daniel, is very much like your
own son was at that time?
Yes. I didn't have to imagine what it was like to live with a child with autism.
It was just a matter of delivering what I knew to the page.
In Daniel Isn't Talking, the father of the child walks out. Is that
what happened in your own life?
No, thank God. But it happens enough in the lives of women around me who have
children with serious special needs. It's hard enough to keep a family together
at the best of times, let alone when you have been given the news that one of
your children has a serious mental condition. You start to imagine all the
worst-case scenarios. Crazy thoughts like "Will he burn the house down?", "Will
he hurt the other children?" , "Will he be dangerous to himself?", "Will other
people hurt him just because he is different?", "How can I protect him?" There
is just a terrific amount of pressure on you all of a sudden. I have read that
the divorce rate among parents of autistic children is very high and I am not
surprised.
Your book talks about the way the mother finds help for her child through
particular types of education and play therapy. Is that fiction or are there
specific treatments that seem to help autistic children?
People are very much divided on what is the best therapy for autistic children.
You have such a variety of approaches, everything from "art therapy" to "music
therapy" to something called "TEACCH." Early on I happened to speak to a man
whose son was eight and had been diagnosed with quite low-functioning autism. He
took my call on his mobile phone, having no idea at all who I was except that I
was an autism mom. He was having dinner at a restaurant in London, but he got up
and walked out of the restaurant, leaving his dining companions on their own, in
order to speak with me. I asked about all these different therapies and what he
thought of them all. He said one sentence which I believe changed the course of
my son's treatment and made him the high-functioning child he is today. He said,
"Choose Applied Behavioral Analysis. Everything else is crap." I don't know why
I believed him, except that it felt to me as though I was speaking to someone in
the trenches, who had been in the trenches for a long time, who had survived
while others failed, who was battle-weary but full of wisdom. It was as though
he was saying, "Here's the only gun that fires. Pick up the bloody gun."
What is Applied Behavioral Analysis?
Simply put it is an approach to teaching in which you reward a child for
offering the desired behavior while ignoring the behavior that is undesirable.
It used to be very clinical in its delivery with the child being made to sit at
a table and perform repetitive tasks until he got it right. But it evolved into
a dynamic, play-based therapy in which the child is set up to succeed, does
succeed, and is immediately rewarded for doing what is required. The best
practitioners inspire the child to want to learn but they are rare. There are
plenty of crummy ABA teachers and some very excellent ones. The best ones are
the parents who learn to do this kind of therapy. We know our kids well and we
know what makes them tick. I remember teaching Nicky what prepositions are by
taking his favorite thing at that time, the number 19, and putting it on top of,
behind, or next to blocks. "Where's number nineteen?" I'd ask, making a bright
purple 19 dance on the block. "On the block!" He loved the number
nineteen so much he learned "on" real quick.
Andy, with whom the author falls in love with in the book, is passionate
about teaching children with autism. Are there people like Andy in real life?
Absolutely there are. Sometimes autism is accompanied by other, serious
conditions and those kids are harder to teach. However, if you have a child who
is "only" autistic and you work with him or her early enough, the child has a
real chance at attending regular school, having reasonable language and social
skills, making friends. There is a small but important community of individuals
who are dedicated to helping these children. I love them. I think they are the
most valuable teachers we have and that the way they teach should really be
extended even to "neurotypical" children, as clearly they are doing something
right.
How would you describe your family now?
We think we're a normal family, but I am not at all sure that others looking at
us would agree! My husband, Alastair, and I have been under the most
extraordinary stress and trials so when things are going well we really enjoy
ourselves. I think I am more of a "worrier" than I used to be, and I was pretty
good at worrying before the whole autism thing. It's just that once you get hit
by something that just isn't supposed to happen, like autism, it changes you.
Our daughter, who is not autistic, is an absolute delight and adores her brother
while understanding that he is a little different. She is the sunniest girl,
always smiling. She says she thinks Nicky is better than other brothers because
he is "much nicer." Nicky, who is nine years old now, attends normal school with
help. He's a charming, talkative boy.
Unless otherwise stated, this interview was conducted at the time the book was first published, and is reproduced with permission of the publisher. This interview may not be reproduced or reprinted without permission in writing from the copyright holder.
A. F. Brady was born and raised a New Yorker. She works as a New York State Licensed Mental Health Counselor/Psychotherapist and has a Bachelor's degree in Psychology from Brown University and two Masters degrees in ... (more)
If you enjoyed:
Daniel Isn't Talking
Try:
The Blind
by A.F. Brady
Nathan Filer is a writer and a mental health nurse. He has worked as a researcher at the academic unit of psychiatry at the University of Bristol and on in-patient psychiatric wards. Filer graduated from the prestigious Bath ... (more)
If you enjoyed:
Daniel Isn't Talking
Try:
The Shock of The Fall
by Nathan Filer
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