Posts Tagged ‘ autism awareness ’

Your Autism FAQs Answered

Monday, April 14th, 2014

As part of Autism Awareness Month, Parents and Easter Seals teamed up to bring our Facebook fans expert  answers to their biggest questions about autism spectrum disorders during our Facebook chat. Dr. Patricia Wright, a board certified behavior analyst and Easter Seals’ National Director of Autism Services, and 2014 Parents Social Media Award Winner Autism Daddy, a 44-year-old blogger and dad to a 10-year-old son with severe/classic autism, shared their expert opinions on all things autism.

Note: Some responses have been edited for clarity.

“What do you wish more people knew about autism spectrum disorders?”

Dr. Wright: I wish that all parents knew how important it is for EVERY child to be screened for autism and other developmental disabilities as recommended by the American Academy of Pediatric Guidelines. For autism, that is at 18 months and again at 24 or 30 months. For society as a whole, I wish that people could meet the many adults living with autism who are happy, contributing members of society. I think this would leave to greater acceptance of people living with autism and increase the opportunities for children and adults with autism to have greater success in life.

“What are your thoughts on the rising numbers in children with autism? What do YOU believe is a factor?”

Dr. Wright: “There is certainly lots of discussion about the rising prevalence. I have focused my career on supporting people who have already been diagnosed. I do look to the Centers for Disease Control and Prevention for information and there is some great research being done at places like UC Davis  that are trying to answer this important question.”

“My son was diagnosed with an autism spectrum disorder at 22 months. He is now 25 months and with the help of speech and Applied Behavioral Analysis therapies, he went from completely nonverbal to speaking more than 40 words appropriately (as well as better eye contact and interaction). I’ve heard of, ‘falling off the spectrum.’ Have you seen this happen? Is it really possible?”

Dr. Wright: “The most recent data reports that approximately 13-17 percent of children who are accurately diagnosed with autism lose their diagnosis.”

“Is there a guide of the actual spectrum, from severe to non-severe?”

Dr. Wright: “Autism is diagnosed via observation and interview. Autism diagnostics are typically conducted by a team of professionals which might include a physician, psychologist, speech-language pathologist, occupational therapist, and others as appropriate. There are two ‘gold-standard’ tools: the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). These are the best tools we have. The ADOS is an activity based assessment that involves interaction between the parent and the assessor. The ADI is an interview conducted with the parent. It is important to have professionals engaged in the assessment that are trained in autism diagnosis and using good assessment tools like the ADOS and ADI-R. A diagnosis is often a multi-step process and based upon the unique needs of the child there may be other assessments that need to be conducted such as a hearing test, genetic testing and others. Your healthcare provider should lead you through the diagnostic process.”

“Different doctors tell us different things about where our son is on the spectrum. I’ve been told he can’t be because he speaks and is too social. He has a very low IQ. So is he what some would say high functioning?”

Dr. Wright: “Speaking and being social aren’t necessarily rule-outs for an autism diagnosis. An autism diagnosis is conducted through behavioral observation of the child and interview with parents. Autism diagnostics are typically conducted by a team of professionals which might include a physician, psychologist, speech-language pathologist, occupational therapist, and others as appropriate. There are two ‘gold-standard’ tools the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). These are the best tools we have. The ADOS is an activity based assessment that involves interaction between the parent and the assessor. The ADI is an interview conducted with the parent. It is important to have professionals engaged in the assessment that are trained in autism diagnosis and using good assessment tools like the ADOS and ADI-R. A diagnosis is often a multi-step process and based upon the unique needs of the child there may be other assessments that need to be conducted such as a hearing test, genetic testing and others. Your healthcare provider should lead you through the diagnostic process.”

“What has been the most helpful resource for you as a parent of a child with autism?”

Autism Daddy: “Facebook! Seriously when my son first was diagnosed, it was pre-Facebook and I went to a few support group meetings in person. The parents were all at different parts of their autism journey, and most were higher functioning than my son. I found the support group meetings frustrating and uninformative. The great thing about Facebook is that you can find the specific support group that fits your needs. Low-functioning, Aspie’s, non-verbal, autism and epilepsy, etc.”

“What do you wish more people knew about what it’s like to raise a child with autism?”

Autism Daddy: “That it can be very hard, exhausting, and isolating. That’s not easy to hear, I know, but it’s the truth. Though the autism parents you know may be putting on a brave face and saying they’re fine and don’t need help, offer to help them anyway. And all you autism parents out there: stop acting so damn strong. I don’t want pity as much as the next guy, but there’s no shame in saying you are overwhelmed and need help.”

“What do you find is the most effective way to encourage your child to communicate with you—and others?”

Autism Daddy: “My son is a tough customer when it comes to communicating, but the iPad is starting to work its magic. He’s able to navigate the iPad like a champ, which is great since he doesn’t have fine motor skills. He likes a lot of the toddler apps like Monkey Preschool Lunchbox and Elmo’s Numbers & Letters.”

My 3 ½-year-old daughter was evaluated a few months ago. They told me she’s not autistic, yet she’s on the spectrum scale. She tells me what she needs and wants, knows how to count to 20, is familiar with her colors, etc. How do I explain or make people aware when they wonder why she doesn’t talk as well as other kids her age?”

Autism Daddy: “Don’t get bogged down in the labels. Maybe she’s autistic, maybe she’s not. The key is that she’s young, and she needs a little extra help. When people ask, just say she’s a bit speech delayed. If the experts tell you she’s on the spectrum, don’t freak out. Use that diagnosis to get extra services like speech and occupational therapy.”

“Do they always flap their hands and walk on their tiptoes? Can they be on the lower end of the spectrum if they don’t do this but have other signs?”

Autism Daddy: Flapping and toe walking are just a few of the “stims” that a lot of kids with autism do, but not all. Just because they do or don’t doesn’t indicate their severity.”

Dr. Wright: “Autism is a spectrum disorder, so every child presents symptoms in their own unique way. Not every child with autism has toe-walking or hand-flapping and these behaviors in isolation would not indicate a severity level.”

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Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective
Children with Autism: The Parents Perspective

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How Has Autism Affected Your Friendships?

Wednesday, April 2nd, 2014

There are so many important issues surrounding autism: early detection. Proper diagnosis. Early intervention. Research-proven treatment. Bullying. Nutritional complications. Safety. At Parents, we’ve covered them all. But there was one angle we hadn’t addressed, and it was the impact the diagnosis has on friendships between parents. Writer Jamie Pacton (at right in photo) pitched us a moving essay about her own story: Ever since eighth grade, she and her best friend Ashleigh (at left) had been on parallel tracks, and even ended up living in their hometown after marriage and getting pregnant at precisely the same time. They each gave birth to a son within four days of one another. But that’s where the similarities ended, because Jamie’s son, Liam, would go on to be diagnosed with autism, and Ashleigh’s would not.

The strain this put on their relationship was immense. It took Jamie quite some time to come to terms with Liam’s diagnosis and all it entailed, and she found herself increasingly jealous of the kind of mothering experience Ashleigh was having. Ashleigh, meanwhile, was often at a loss for words–or the right words–when trying to discuss Liam’s challenges. If you read her touching, honest essay, you’ll learn how she and Ashleigh handled it.

It obviously resonated with parents, because Jamie has heard from many who are in a similar situation. One mom tracked down Jamie’s email to thank her for the article and let her know how much she could relate. She described how, when trying to get out of a reunion with college friends, she tearfully burst out, “I don’t want to see how well your kids are doing and resent you! I’m sorry!”

Thankfully, Liam, who is nearly 6 and nonverbal, is making huge strides of late. He went to the zoo last week and for the first time, he didn’t need a stroller–he was able to walk through the whole zoo, he rode a pony and a train, and was engaged with the animals. And in another first, in January he used his Yes/No board to answer two questions he’d never answered before: “Do you love your Mommy?” “Do you love your Daddy?” I think you know what the answers were, and what it meant to Jamie and her husband.

For ways to help friends understand Autism, download Autism Speaks Family Support Took Kit.

A Test for Autism Risk: Head Lag
A Test for Autism Risk: Head Lag
A Test for Autism Risk: Head Lag

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