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6 Things You Need to Know to Survive the Autism DiagnosisA mother shares her tips and answers to the challenges an autism diagnosis brings.
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The diagnosis of autism can be challenging to families, but there are things you can do.
“ This multi-million dollar business is founded on the fears of anxious and desperate parents like us.”
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An autism diagnosis can leave us paralyzed with fear for our children’s future. However, these six things will help you and your family survive autism:
1. Don’t be in denial for too long. We all do this. My denial cost us valuable time. We all hope our kids have been misdiagnosed and want it to be anything else. Back then I didn’t think autism was treatable. I was told there was no cure, no recovery or hope with autism. So I convinced myself that my son didn’t really have autism and he probably was the next genius like Albert Einstein or Thomas Edison. They were late talkers and a little different. What I didn’t realize was we were already card-carrying members of the A-club and how many other parents were having similar thoughts about their kids.
2. When a treatment sounded too good to be true, it was. There are no magic fixes for autism. We went from doctor to doctor searching for the "cure." It is almost impossible to avoid the snake oil salesmen that are on every corner trying to sell you the "Cure of the Week." This multi-million dollar business is founded on the fears of anxious and desperate parents like us. In my more rational moments I knew that, but it still didn’t stop me from looking everywhere for that instant fix.
3. Treating autism medically only made it possible for my child to learn. We used our own version of Applied Behavior Analysis (ABA) to catch him up on all he missed. Not having an ABA provider where we lived was actually a blessing in disguise. Our son, Ryan, got ABA all throughout his day in the most natural way. It was mostly good parenting with a little ABA thrown in. When he didn’t understand something, school was immediately in session and his classroom was wherever we happened to be.
4. Motivation is the key to success with any behavioral or educational program. There is more than one way to do this. ABA is not the only thing that works. Relationship Development Intervention (RDI), Pivotal Response Training, Son-rise or whatever program you chose also are effective if you can motive your kid and you stick with it. We used what Ryan loved to teach him. In other words electric plugs, light switches, elevators, cars, computers, sharks, or technology were part of every lesson.
5. Ignoring the negative and reinforcing the positive works on husbands too. I wish I had known then what I know now. There would have been a lot less arguing if I had used ABA techniques on my husband, Frank. But back then I was too overwhelmed to realize my husband needed attention too. Use what your husband loves to help him get on the same page. What do men love? Good food, respect, and sex. If any of you husbands get lucky tonight, you have me to thank!
6. The effect all of this had on his "typical" sister was a constant concern. Ryan got more than his share of the attention. So we made Megan part of the solution. Meg was one of Ryan’s most effective therapists and in charge of pretend play. She was better at playing than the rest of us who had forgotten how to pretend. His sister was also the fashion police. Cute haircuts and the right clothes helped Ryan be accepted by his peers. My sense of high fashion was tie-dye and sweat pants, so Meg said I couldn’t have that job! Megan knew that at least once a week she would have me all to herself. Every Saturday it was just us alone watching her favorite TV show. All week long, we would whisper and plan for our special time. We stashed the cookies and candy we couldn’t eat in front of Ryan in secret hiding places. When Saturday finally arrived, we cuddled and ate junk food until our stomachs ached. Frank would keep Ryan busy and out of our hair with one of their adventures. They would visit the plugs in the hardware store or ride the elevators in the local hotels.
Marcia Hinds is Ryan’s mom and the author of "I Know You’re In There—Winning Our War against Autism." This inspirational book tells how her family combined medical, behavioral and educational interventions to help Ryan. Marcia has a degree in sociology and psychology from UCLA and is a credentialed teacher. But, Marcia’s most important qualification is that her family beat autism. You can preview her book at www.iknowyoureinthere.com. Marcia is available for speaking engagements, media appearances, and interviews.
1. Don’t be in denial for too long. We all do this. My denial cost us valuable time. We all hope our kids have been misdiagnosed and want it to be anything else. Back then I didn’t think autism was treatable. I was told there was no cure, no recovery or hope with autism. So I convinced myself that my son didn’t really have autism and he probably was the next genius like Albert Einstein or Thomas Edison. They were late talkers and a little different. What I didn’t realize was we were already card-carrying members of the A-club and how many other parents were having similar thoughts about their kids.
2. When a treatment sounded too good to be true, it was. There are no magic fixes for autism. We went from doctor to doctor searching for the "cure." It is almost impossible to avoid the snake oil salesmen that are on every corner trying to sell you the "Cure of the Week." This multi-million dollar business is founded on the fears of anxious and desperate parents like us. In my more rational moments I knew that, but it still didn’t stop me from looking everywhere for that instant fix.
3. Treating autism medically only made it possible for my child to learn. We used our own version of Applied Behavior Analysis (ABA) to catch him up on all he missed. Not having an ABA provider where we lived was actually a blessing in disguise. Our son, Ryan, got ABA all throughout his day in the most natural way. It was mostly good parenting with a little ABA thrown in. When he didn’t understand something, school was immediately in session and his classroom was wherever we happened to be.
4. Motivation is the key to success with any behavioral or educational program. There is more than one way to do this. ABA is not the only thing that works. Relationship Development Intervention (RDI), Pivotal Response Training, Son-rise or whatever program you chose also are effective if you can motive your kid and you stick with it. We used what Ryan loved to teach him. In other words electric plugs, light switches, elevators, cars, computers, sharks, or technology were part of every lesson.
5. Ignoring the negative and reinforcing the positive works on husbands too. I wish I had known then what I know now. There would have been a lot less arguing if I had used ABA techniques on my husband, Frank. But back then I was too overwhelmed to realize my husband needed attention too. Use what your husband loves to help him get on the same page. What do men love? Good food, respect, and sex. If any of you husbands get lucky tonight, you have me to thank!
6. The effect all of this had on his "typical" sister was a constant concern. Ryan got more than his share of the attention. So we made Megan part of the solution. Meg was one of Ryan’s most effective therapists and in charge of pretend play. She was better at playing than the rest of us who had forgotten how to pretend. His sister was also the fashion police. Cute haircuts and the right clothes helped Ryan be accepted by his peers. My sense of high fashion was tie-dye and sweat pants, so Meg said I couldn’t have that job! Megan knew that at least once a week she would have me all to herself. Every Saturday it was just us alone watching her favorite TV show. All week long, we would whisper and plan for our special time. We stashed the cookies and candy we couldn’t eat in front of Ryan in secret hiding places. When Saturday finally arrived, we cuddled and ate junk food until our stomachs ached. Frank would keep Ryan busy and out of our hair with one of their adventures. They would visit the plugs in the hardware store or ride the elevators in the local hotels.
Marcia Hinds is Ryan’s mom and the author of "I Know You’re In There—Winning Our War against Autism." This inspirational book tells how her family combined medical, behavioral and educational interventions to help Ryan. Marcia has a degree in sociology and psychology from UCLA and is a credentialed teacher. But, Marcia’s most important qualification is that her family beat autism. You can preview her book at www.iknowyoureinthere.com. Marcia is available for speaking engagements, media appearances, and interviews.
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