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Kingsley on "Holland"
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Istar on Harry Potter
WITH A CHILD’S AUTISM
A Creative Parents Interview with Karen Siff Exkorn
Siff Exkorn is the author of The Autism Sourcebook: Everything You Need
to Know About Diagnosis, Treatment, Coping and Healing. Karen’s
son Jake, now nine, recovered from the autism with which he was diagnosed
at age two. To help other parents, Karen has created a comprehensive sourcebook
that describes her own experiences and provides a range of resources.
Karen also lectures worldwide to raise awareness and encourage research
from Jake whom I spoke to on the phone after Karen and I completed our
interview. He’d just come home from school and was willing to describe
his memory of having autism.
Jake:” I used to lie on the ground doing nothing. My brain was getting
disconnected. It’s like you know no words in a language and everyone
else knows everything about that language.”
CreativeParents: What would
you like to say to a parent with a newly diagnosed child?
Karen Siff Exkorn: Two key
words – Early Intervention. Get your child treatment as soon as
possible. I would suggest at least 25 hours per week of treatment.
CreativeParents: How does
a parent know whether to take a child for a diagnosis?
Karen Siff Exkorn: Trust
your instincts. Parents pick up on early signs. Sometimes parents will
doubt themselves because pediatricians, like ours, ignore or dismiss symptoms.
In our case, we were told that Jake’s not responding to his name
was a sign of obstinacy displayed by typical toddlers that age. Jake also
stopped pointing to things he wanted, had little or no eye contact, engaged
in “odd” behaviors like constantly peering out of the corners
of his eyes, and eventually stopped speaking entirely.
Over the course of six months, we watched as our once energetic and talkative
toddler transformed into a passive and silent little boy. During that
time, I took Jake to the pediatrician a number of times and expressed
my concerns. “Boys develop later than girls,” he said repeatedly.
I listened to him for months before finally trusting my instincts and
taking Jake to another doctor—a developmental pediatrician, who
took my concerns seriously. It was then that I learned that Jake had been
displaying classic signs of autism.
The diagnosis came as both a shock and an awakening. My big lesson was
that often a parent’s instincts are much more accurate than the
opinions of the “experts.” Now, in my consulting work with
families, I encourage parents to seek out a specialist if they are at
all concerned about their child’s development.
CreativeParents: What do
pediatricians need to know?
Karen Siff Exkorn: One of
the first steps in advocacy is educating the doctors. Pediatricians don’t
always know how to detect early signs of autism. For instance, early signs
include: lack of eye contact, not pointing to objects, lack of speech,
and not relating to others. Other early warning signs include repetitive
behaviors such as flapping or spinning. Many parents, like us, assume
that their child is deaf because they stop responding. In fact, I took
Jake to see an audiologist because I was convinced that he had hearing
I’m not trying to make the case that all pediatricians are misinformed.
It’s just that many of the early signs of autism that we know about
today are different from the early signs that doctors may have learned
in medical school. That’s why I encourage pediatricians to get educated
as quickly as possible—so that they don’t miss out on diagnosing
children as early as possible.
The Autism Sourcebook has a detailed list of early warning signs of autism.
In the appendix, there is also a helpful test called the M-CHAT, which
can help both parents and pediatricians identify if a child might have
indicated that Jake recovered from autism. How frequently does that happen?
Karen Siff Exkorn: About
5-10% of children recover from autism. My hope is that with more research
and intensive early intervention the statistics will change. Autism is
a spectrum disorder which ranges from mild to severe. There is also a
spectrum of success in the outcomes and progress that children make. Just
like typical children, kids with autism develop at their own rates. The
measures of success vary. Success for one child might mean saying one
word. For another, it might mean being able to give and receive hugs.
For some children, success means being accepted at a school of children
with autism; others may go on to be mainstreamed in a regular education
CreativeParents: How did
you, as a parent, maintain your energy and optimism during this process?
Karen Siff Exkorn: It wasn’t
easy. But I learned to celebrate the little victories along the way and
remain focused on the present. Many parents become so future-focused that
they miss out on the wonderful child who is right there in front of them.
They tie up their own well-being to their child’s progress. For
example, they will say, “I’ll only be happy when my child
speaks, or relates…” I encourage parents to look for the little
victories along the way—when a child can sit through a meal without
having a tantrum or look at you when you call his/her name, even if it’s
only for a fleeting moment. I also encourage parents to avoid getting
trapped in the comparison game. You need to look at progress within the
context of your own child. It can be disheartening to compare your child
to typical children. In fact, comparisons are difficult in general. If
you compare your child to others with autism, then you may feel guilty
if your child is progressing faster, or discouraged if your child is progressing
CreativeParents: How did
Jake’s autism affect areas of your life, such as your friendships
with other parents?
Karen Siff Exkorn: Jake’s
autism affected every aspect of my life. In the beginning, I was overcome
with a sense of grief. I chose to isolate myself because I felt that no
one really understood what I was going through. In terms of my friendships,
in all honesty, I felt resentful of friends with typical children. I’d
ask myself “What did they do that I didn’t do?”
My friends’ reactions to Jake’s diagnosis were mixed. Some
friends were extremely supportive and had no trouble dealing with Jake’s
diagnosis and our new sense of priorities. But others felt uncomfortable
around me and around Jake. They didn’t know what to say to me, so
there was a sense of awkwardness. They’d come up with these heartfelt
statements like “Everything happens for a reason,” but I couldn’t
bear to hear things like that. Because at the time, I was not open to
seeing the reason why my son had autism. So I realized I had to be assertive
and tell my friends what to say and not to say to me.
I also had to educate my friends about how to act around Jake. I taught
them to crouch down in speaking to Jake, to refrain from hugging him and
to keep their sentences short and simple. It turns out that the entire
experience helped me re- bond with many friends, and inspired an entire
chapter in The Autism Sourcebook called “Advice to Friends and Loved
CreativeParents: How was
your relationship with your husband affected by Jake’s autism?
Karen Siff Exkorn: My husband
and I had very different reactions to Jake’s diagnosis. My husband
remained in denial for months, while I worked through feelings of grief.
As you can imagine, this was extremely stressful on our marriage. When
my husband finally came to terms with Jake’s diagnosis, I thought
it would be a bonding experience for us. Instead, all of our energy was
focused on helping our son, with little left over to nurture our relationship.
If it hadn’t been for the help of a couples’ therapist, I’m
not sure our marriage would have survived. Thankfully, we have an even
stronger bond today. I now encourage parents to work on their own relationships
while they are working to help their child. It’s too difficult to
go through this process alone.
Grandin has written and spoken publicly a lot about autism – what
are your thoughts about how she has presented autism to a wider public?
Karen Siff Exkorn: I have
great respect for Temple Grandin, She is an incredibly accomplished professor
and author, who has shared her story about what it’s like to live
with autism. Temple has offered us all a rare glimpse inside the world
of autism. She helped me as a mom to understand our son’s tactile
sensitivities when he refused our hugs in the early stages of his autism,
and helped me as a consultant to better understand other children with
CreativeParents: Why do
you think so many more children are diagnosed with autism now than in
Karen Siff Exkorn: That’s
a key question that’s being researched today. The rise in cases
of autism has been tied to improved awareness of the disorder and changes
in the way the condition is diagnosed. Researchers are looking at different
components to find the cause of autism, such as the brain, immune system,
immunization, pregnancy and genetics. I caution parents not to get so
caught up in what caused their child’s autism that they miss out
on precious treatment time.
CreativeParents: How did
you approach Jake’s intensive treatment?
Karen Siff Exkorn: I did
a lot of research into different treatments for autism and found that
ABA, Applied Behavior Analysis, had the most scientific research supporting
it. The studies showed that 40 hours/week could make an incredible difference
with children with autism, and so we committed ourselves to this intensive
treatment. In addition, Jake had speech therapy and occupational therapy.
We also used homeopathic treatments and a gluten-free/casein-free diet.
CreativeParents: Why do
you think the early intervention was so successful in Jake’s case?
Karen Siff Exkorn: Research
shows that intensive early intervention is the key to helping children
with autism. Because every child is different, progress varies. In Jake’s
case, I think that we were very fortunate. In addition to our commitment
to his intensive treatment, I believe that Jake’s brain was wired
in such a way to form new connections, which ultimately led to his recovery.
Was Jake’s progress immediate?
Karen Siff Exkorn: Not at
all. In the beginning, it seemed that Jake was barely responding to the
treatment. But then, he gradually started showing progress in little steps.
He learned to clap and wave. He established eye contact and responded
to his name. Jake’s speech therapist said he’d never speak.
I tried to remain realistically optimistic and, as I said before, celebrate
the little victories. Jake proved her wrong. He learned to make sounds
that became words. Words became sentences, which ultimately led to spontaneous
Jake’s play skills emerged. He began to make friends and then was
mainstreamed at a typical school. Along the way, I wasn’t focused
on recovery—in fact, I didn’t know that recovery existed in
children with autism. I just wanted Jake to reach his full potential,
whatever that might be. That is what kept me going.
CreativeParents: What options
do parents have if it is not possible to provide the kind of intensive
home treatment you provided for Jake?
Karen Siff Exkorn: Treatment
option settings may depend on the family’s lifestyle. For example,
If a parent or caretaker can be at home during the day, then parents often
opt for home programs when their child is young, which is what we chose
for Jake when he was age two. If both parents work outside of the house,
or if there are other siblings at home that demand a parent’s time
and attention, then placing the child in a school or clinic-based setting
may be preferable.
CreativeParents: What do
parents need to know about paying for their child’s treatment services?
Karen Siff Exkorn: It's
important that parents know that they are legally entitled to receive
treatment services for their children at no cost from either their local
early intervention agency (if the child is under age 3) or their school
district (if the child is between ages 3 and 21). Depending on where you
live, the process can sometimes be a challenge, but this is when well-informed
parents can really step up and become advocates for their children. Because
the law can sometimes be confusing, I've explained it in user-friendly
language in The Autism Sourcebook. I also offer tips on everything from
what to wear, to what to say, and what not to say in the group meetings
where services are decided, so that parents can maximize the services
they get for their child.
CreativeParents: What is
your goal now?
Karen Siff Exkorn: I want
to be able to reach out to parents whom I can’t meet with in person
to help them on their journeys. The Autism Sourcebook is my way of doing
that. It’s the book I wish I’d had when Jake was diagnosed.
It provides a roadmap for parents—offering them good practical advice
as well as emotional support.
I also want to The Autism Sourcebook to reach out to doctors so that they
can more easily identify early signs of autism and more effectively direct
parents towards the right course of treatment.
CreativeParents: How does
Jake relate to his past experience?
Karen Siff Exkorn: We’ve
been very open with Jake about his autism. He has certain memories---he
remembers lying down and staring at the wheels of trucks. He remembers
trying to speak and feeling frustrated that everyone was talking so quickly
in a language he couldn’t seem to understand. Jake knows where he
started out—being disconnected and non-verbal—and where he
is now—indistinguishable from his peers. We all feel very fortunate.
2005, Dr. Istar Schwager
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