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A Creative Parents Interview with Karen Siff Exkorn

Karen 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 on autism.

Quote 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 difficulties.

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 autism.

CreativeParents: You’ve 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 school.

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 more slowly.

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 Ones.”

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.

CreativeParents: Temple 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 autism.

CreativeParents: Why do you think so many more children are diagnosed with autism now than in the past?

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.

CreativeParents: 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 language.

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.

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