- You know exactly what your child is saying even though she has never said it… EVER.
- You go to visit your friends who have children and they apologize for how their kids are behaving, yet you never even noticed.
- You have ever worn more of your child’s food then he has eaten, and he is 6.
- You have ever tried “stimming” just to see what it is all about.
- Using just your peripheral vision, you can snag crayons from your child’s hand before they go in the mouth.
- You see a kid being a complete terror at the grocery store and you do not judge.
- You have been punched in the face by your child and instead of getting angry, you laugh it off.
- Your child saying, “I love you” even if by echolalia makes you feel like you are the king of the world.
- You have eaten a family dinner in the dark on several occasions.
- You have shared belly laughs with a child that you have no reason as to why they are laughing.
- You have been given every crackpot theory about what causes autism and what will make your child better, and have kept yourself from going insane.
I still remember the day in 2009 when I was sitting in the committee hearing room of our state capitol. We were waiting for the next parent to testify in favor of our Autism Insurance Reform bill—in its second year of battle here in Missouri. Many moms and dads sat in the back with me, clutching their note cards, printed testimonials and handwritten pages. Though we were all nervous, we were eager to tell our stories to the legislators whose decision could make such a huge difference in our children’s lives.
Megan was a local volunteer, autism advocate and parent of two children, one of whom (Henry) has autism. Her hands were shaking a little, but she delivered her message in a calm and confident voice. She was confident the legislators would respond to her personal testimony. Megan explained that she was in extreme debt, had declared bankruptcy and had to sell her home—all to pay for Henry’s autism behavioral treatment. But Megan was not there to complain. She wanted to share Henry’s progress and positive outcomes. Thanks to more than 20 hours a week of early behavioral intervention, Henry had uttered his first words. She told the legislators that her financial sacrifices were well worth that precious reward. But she asked that other families not have to sell their homes and declare bankruptcy for their children to receive treatment for autism. I was not the only one wiping tears at the end of her story.
But the next individual who testified opposed our Autism Insurance Bill. He represented an insurance provider, and he used the same argument that insurance lobbyists were feeding the legislators across the country. “Although we empathize with Megan’s struggle,” he said, “the simple fact is that behavioral therapy is an experimental treatment for autism.” He said it was reckless for insurance providers to pay for experimental therapies and that despite Henry’s improvement, there was no predicting whether other children would benefit.
His words produced gasps around the room. My heart sank.
But wait, this is where the story gets good. Next, Lorri Unumb, Autism Speaks vice president for state government affairs, took the stand. She too shared the progress of her son from intensive applied behavioral analysis (ABA). But it was the next part of her testimonial that every legislator in the room heard loud and clear.
Countering the insurance industry testimony head-on, Lorri stated unequivocally, “ABA is not experimental!” And she had the published research studies to back up her statement.
It didn’t matter whether the studies were done in Missouri or another state. Each study had been vetted and published by a leading scientific journal. The evidence made clear that ABA is far from experimental, and it demonstrated the importance of early intervention in producing the most successful outcomes.
The Missouri House of Representatives voted our bill out of committee that day. It went on to our governor’s desk to be signed into law—all because we had the scientific research to back up our efforts.
Never before had the importance of funding research become so clear to me!
Currently Autism Speaks is funding additional studies that can provide a firm foundation for our advocating that insurers cover additional types of behavioral therapy–such as social skills training, infant-toddler interventions and cognitive behavioral therapies focused on social and communication skills.
And that’s crucial because the downside to our story was that the Missouri bill mandated coverage for some but not all autism treatments. Many more treatment options need to be further investigated to ensure they are safe and produce tangible benefits for those who struggle with autism.
The great news is that Autism Speaks just funded $1.8 million in treatment grants that will further our understanding of the most promising new interventions—not only for children but for all those on the spectrum—from early intervention therapies in underserved communities to job interview training for adults.
We look to these studies to give us the ammunition we’ll need the next time we are sitting in front of a room full of government decision makers. And they would not be possible without your support at our Walks and other fundraisers.
When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.
Autism Speaks continues to work for state-mandated medical coverage for autism interventions. To date, its advocacy efforts have helped secure autism insurance reform laws in 29 states. To learn more about Autism Speaks advocacy efforts, please visit http://www.autismvotes.org.
For more news and perspective, please visit the Autism Speaks science page.
This post is by Tim, a freelance writer and designer who works for Myself, a business that has been thumbing its nose at The Man for six years now. He’s both a stay-at-home (sounds better than ‘kept man’) and a work-at-home-and-anywhere-else-I-can-get-away-with-it dad. You can read the original post here.
Be aware that you are not alone. Be aware that there are entire communities of us – locally, online, everywhere – joining together for solidarity, support, and advocacy.
Be aware that we’ve got each other’s backs.
Be aware that not only is grief a normal part of this, it is required. Give yourself permission to go through it.
Be aware that your child is the same precious soul as the newborn baby you once held.
Be aware that some days you’ll feel like you can’t do it, but you will.
Be aware that we’re now free from being average, and are instead free to kick butt.
Be aware that autism allows amazing gifts to be expressed that otherwise would not be.
Be aware that your child will achieve something after trying so hard for so long, and you’ll feel like you all won the World Series. Be aware that this will happen regularly, and often when you least expect it.
Be aware that some days you will float on air and feel like anything is possible.
Be aware that often it is also a desperate marathon. It can feel like 26.2 miles over and over again, and you’re wearing six layers of drenched corduroy, while carrying a dump truck on your back.
Be aware that you only have to go one step at a time.
Be aware that being angry or afraid or frustrated or burned out or desperate is completely normal. If you feel completely crazy, be aware that someone else is too; it’s only when you either feel sane or feel nothing that you might want to worry.
Be aware of words like hope, advocacy, determination, community, faith, love, and perseverance, and don’t forget them.
Be aware that one thing unites us and transcends everything we disagree on – the children we love.
Be aware that there are people preying on our fears and becoming rich off of that. Be aware that there’s a special place for them, and it’s not a particularly nice one.
Be aware that autism is never the same from day to day or person to person.
Be aware that our children grow into adults and that we must fight for the rights of all.
Be aware that autism will lead you to some of the kindest, most skilled, and compassionate people in the world.
Be aware that by accepting the challenges you will experience an even greater joy when they are overcome.
Be aware that life can feel like a constant fight against somebody or something; be aware for whom you are fighting and draw strength from that.
Be aware that everyone we meet is fighting a great battle in their lives, regardless of who they or their children are. Be gracious, and model that for your kids.
Be aware that the sun does come up every morning.
Be aware that you are stronger than you think you are.
Be aware that some days all you can do is just roll up your sleeves, hike up your big boy or girl pants, and dive in.
Be aware that love is always the best therapy.
Be aware that you should never say never.
And be aware that I wouldn’t trade my life for anything.
Where Invisible Robots Rule (Atlantic City Weekly)
In Frank Quigley’s world, an Invisible robot protects us all. His arch nemesis, Rock Man, is constantly threatening the world. It’s what super villains do. Read more.
Photography program aids developmentally (St. Louis Today)
A program in the St. Louis area is offering proof that those with development disabilities can make meaningful contributions and showcase talents just like anyone else. Read more.
Welcome back, Wayne Cotter (Cleveland Jewish News)
Wayne Cotter may have an engineering degree, but these days when he works, he sharpens his wit instead of his pencils. Read more.
Single mom seeking bright holiday for kids (The Daily Herald)
An unemployed, single mother in Columbia is trying to raise two sons on child support and food stamps. With the local jobless rate hovering above 12 percent, her story might not be that unusual. Except for this: Her youngest boy, 9, has a rare auto-immune condition. He must get nourishment through a feeding tube. He also struggles with autism. Read more.
New ‘breathtaking’ studios unveiled at Muswell Hill school (Haringey Independent)
Pupils at an specialist school for young people with autism have been given a helping hand into the world of work thanks to new facilities unveiled yesterday. Read more.
After my run this morning, like any obsessed runner I went over to the computer, before showering, to upload my run data. As my stats wirelessly uploaded from my new toy (the Garmin 610), I manually entered my run into dailymile and then meandered over to Facebook to see what my far-flung friends were up to. I can across some pictures of a dear friend who had recently taken a trip with her family to North Carolina. Though we have not seen each other in what has to be over a decade, I have always felt a certain closeness to her and her husband. Simply put, they are good people.
As I scanned through her album, I got lost in the joy and apparent ease their children and her husband’s brother’s children had with each other. It seemed so…easy. I have to admit that there is a part of me that is jealous of what they have.
Don’t get me wrong, I wouldn’t trade Brooke for anything, and quite honestly, if someone walked up to me right now and offered me a pill that would “cure” her autism, I’m not sure what it is I would do. That being said, I wish it was easier for her. I wish that social interaction and connection were not something that she just doesn’t quite get. I wish that Katie didn’t have to feel embarrassed when Brooke made awkward social bids. I wish that I didn’t have the mindset that I have to anticipate some of those awkward bids and feel the need to cut them off at the pass. I wish, I wish, I wish…
Everybody has issues. Everybody has problems. I listen to the local moms complain about this and that. Some of them feel silly to me, but the truth is, their problems are real to them. Everybody has issues. Everybody has problems.
Ours are just different.
I just sometimes wish they weren’t.
Richmond doctor says certain foods counteract symptoms of autism (Richmond, Va.)
The six-day search for Robert Wood, Jr., a nine-year old boy with autism, had a happy ending. However, the search continues for answers about autism and why the disorder continues to baffle scientists and researchers. Read more.
Couple who meet at work have autistic babies? (India)
Experts are becoming increasingly concerned that engineers, scientists and computer programmers who meet their partners at work may be fuelling an increase in cases of autism. Read more.
Sign language benefits hearing children and those with autism. (Asbury Park Press)
More than two decades ago, Marilyn Daniels began researching the benefits of sign language — not just for deaf people, but for hearing children and babies and those with learning disabilities and autism. Read more.
Reading specialist autism school proposed (UK)
The National Autistic Society (NAS) said the school, which could open in September 2013, would add to educational provision in Berkshire. Read more.
UPDATE: Girl with autism rescued from cold pond, doing fine (WHPTV)
Scary moments for the family of a 7-year-old child with autism when the little girl wandered off and was found neck-deep in a nearby pond. Read more.