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IACC Services Workshop: Building a Seamless System of Quality Services & Supports Across the Lifespan

November 5, 2010 1 comment

The Interagency Autism Coordinating Committee (IACC) will hold an IACC services workshop, “Building a Seamless System of Quality Services & Supports Across the Lifespan” on Monday, November 8 in Rockville, Md. The meeting is free and open to public and will also be available as a live videocast.

The workshop will focus on policy issues related to the system of services and supports for people with autism spectrum disorders and their families. Visit the IACC website for more details.

In Their Own Words – Stepping into the Light

August 3, 2010 42 comments

This “In Their Own Words” essay is written by Molly Keene, the mother of a son who has autism.

I am Molly, and yesterday I found out my son has autism spectrum disorder. The term “found out” is sort of ridiculous, because you go through months of evaluations for this sort of thing. But yesterday I found out, my husband and I said it to each other – “our son has autism” – and so I’m ready to step into the light.

My son has autism. And he’s amazing. And it’s hard, but it’ll be great. And great trumps hard any day in my book.

***

At the party, the other children surrounded the birthday boy, sweetly singing (and shouting, for the less musically adept) “Happy Birthday.”

There was pizza, and cake, and veggies with dip. Soda was in cups. I looked around for my son and found him, hand on a light switch.

Up.

Down.

Up.

Down.

Luckily, the lights were connected to nothing noticeable. But his hand caressed it and flicked it up and down, a ritual repeated many times daily. The front of his clothes were soaked from the water table at the children’s museum. As we gently moved him away from the lights, he melted down. Logic told us it was past his naptime, but inside of me, something whispered.

- Do you see? He’s not like them.

My husband looked over at me and asked what was wrong. I blinked and looked up, anywhere else.

- You’re afraid he will never have a party like this.

My eyes blinked back tears, and I stood with the baby and walked over to the window to regain my composure. I watched the wind rustle through the green leaves on the trees, and I grieved for myself. Not for the boy, who was happy as could be doing things his way.

It was me that needed to adjust, not him.

***

I came in from the garage after a much-needed day of shopping with a friend. A small head popped up over the sofa, and he ran to me, talking as best as he could.

- “Nggah! Raaah! Eye duh. Eye gah. Nuh! Nah! Ennah.” (or something like that)

Whatever he had to say, he was quite adamant about it, as he laid his head on my shoulder and gave my other shoulder three pats. He rested there for a minute, about like any young child. We walked into the living room, where Papa sat with the baby. My boy pulled me to the bookshelf, beginning the same thing we did a dozen times a day. I started handing him DVD cases, and he would push them back up until I got to the one he wanted. He would seize it and run off to sit and gaze at it happily. I smiled as the ritual was repeated. I knew that my kitchen cabinet held several DVD cases, and that in there, he would admire them like a photo album.

***

He was still awake.

I crept up the stairs and opened the door. A little hand pushed an empty bottle into mine. Again, a nightly ritual, as I went down and put a minute amount of milk in it. Back up the stairs I went, and laid down with him on his bed.

First he laid on my legs, using his blankets as a cushion. Then he moved up to lay next to me. I began to sing our nightly songs – “Good Night,” “Twinkle, Twinkle, Little Star,” and “Ollie is a Child of God.”

A small hand went up to my cheek and cupped it. And in that moment, life was perfect. Small fingers snaked into my hair and touched a few, tentatively. He whispered something and cooed at me. I had no idea what he was saying, as usual. But my heart translated for me.

- Mama, I love you. Mama, I know. Mama, I chose you and Papa before I ever came here. Mama, I am happy. Mama, I am perfect, just as I am.

My eyes filled with happy tears – another daily ritual. I finished the last song as on-key as I could, and he softly cheered, “Aaay.”

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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A Picture is Worth a Thousand Words – The ASD Video Glossary

July 6, 2010 1 comment

Social reciprocity, joint attention, sensory defensiveness, hand flapping, and echolalia.

These are just a few of the terms which may sound foreign to a parent who suspects his child may have autism. And even when you look up a word, it is hard to visualize the concept. What exactly does hand flapping look like? What does echolalia sound like?

Autism Speaks, together with First Signs and Florida State University, developed a web-based video glossary to help parents and professionals learn more about the early warning signs of autism spectrum disorders (ASD). The glossary contains over a hundred video clips and is available free of charge, to help parents of children suspected of or recently diagnosed with autism better understand some of the words and terms they might hear used in association with ASD. Whether you are a parent, family member, friend, physician, clinician, childcare provider, or educator, it can help you see the subtle differences between typical and delayed development in young children and spot the early red flags for ASD. Video clips are used to show examples of terms such as echolalia and hand flapping. In many cases, side-by-side video clips show behaviors that are typical in contrast with those that are red flags for ASD. All of the children featured in the ASD Video Glossary as having red flags for ASD are, in fact, diagnosed with ASD.

If you suspect autism or are in the process of obtaining a diagnosis, I highly recommend you utilize the video glossary, which can be found here: http://www.autismspeaks.org/video/glossary.php.

Please note: the ASD Video Glossary is not a diagnostic tool.

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