AGE OF AUTISM

Jo Ashline on Autism and the Adult Child: Honoring the Needs of Every Generation

Managing Editor's Note: It's encouraging to read more posts from around the country on the fears we face as our kids on the spectrum grow older.  I once heard adulthood referred to as "When the school bus stops coming to the house."  Here's another terrific post from Jo Ashline of OC Register in California.   Read and comment on the full post HERE.


One month from today, my son Andrew will celebrate his 10th birthday.

He’ll have a bounce house, a giant cake, and plenty of friends on hand to help him blow out the candles and mark his first decade here on planet earth. And while I’m still trying to wrap my brain around the idea that my baby is turning 10 (is it really possible?) there’s an even more frightening reality that keeps gnawing at me as I make party preparations: He’s halfway to 20, and less than halfway to becoming a man; a man with autism.

Some of you may think I’m jumping the gun here. After all, he’s only in fourth grade and his cheeks feel light years away from a 5 o’clock shadow. It’s probably safe to say that you don’t have a child with autism.

Those of us that do, live in an alternate universe where the services we’ve gone to great lengths to secure for our children are constantly being threatened by budget cuts, changes to diagnostic criteria, misinformed medical professionals and birthdays.

Police and Autism: A Unique Perspective

By Jerry Turning

Alex was 5’9 and every bit of 200 lbs.  He was “uncontrollable” and destroying his family’s home.  We arrived to find Alex’s grandmother on the front porch.  Her arms were literally purple with bruises; the aftermath of one of Alex’s tantrums earlier in the month.  She directed us inside where Alex’s mother was trying in vain to calm him down.  We found him in the basement lying on his back.  Mom was trying to hold his hands.  She was crying.  She was sweating.  She was bleeding.  Around him were toddler toys:  Elmo dolls, a ring-toss game, coloring books.  There were no toddlers in the house.  The toys were Alex’s.  Alex was 14 years old.  He had Autism. 

In recent months there have been many high profile incidents concerning police using force to deal with children and adults on the Spectrum:

-Police Taser Autistic Teen and Then, After Family Complains, Return and Arrest Teen

-Teen with autism shot to death by police

-Autistic Man with Toy Gun Killed by Miami Police Officers

The most gut-wrenching of these incidents involved a young man named Stephon Watts.  Stephon, diagnosed with Asperger’s Syndrome, was shot and killed by police in Calumet City, Ill on February 1^st, 2012 after he slashed an officer with a kitchen knife.  This incident has gained national attention and stirred outrage within the ASD community.  I would like to offer my perspective. 

I am a 16 year-veteran police officer.  I am a police K9 handler and trainer with 12 years experience in searching for wandering ASD individuals.  I am also an Autism Dad. 

Jo Ashline: A Story Behind Every Number

Managing Editor's Note: This post in the OC Register caught my eye.  We can relate to the feeling of shock, the grief and then rolling up the sleeves and getting to work and back to love. 

By Jo Ashline

There is a mommy-to-be out there somewhere rubbing her belly and stocking up on antacids because she’s eating for two (and maybe, sometimes, when no one’s looking, for three). She spends hours researching the best car seat and stroller systems, daydreaming while doing the dishes about long walks in the park and whether she will allow strangers a sneak peak at the most gorgeous baby ever to be born.

Her husband, a good man with a big heart, dutifully goes to work each day, socking away dollars and cents and nursing his own daydreams about teaching his son to play catch. He makes a silent promise to keep his cool when bragging to his co-workers about his boy’s natural talent on the field, his impeccable hand-eye-coordination and his speed and endurance. He does his best to try and stay in the present, but every once in a while, as he crunches the numbers and updates the spreadsheets, he stares off into the distance and pictures his son, a handsome fellow that looks remarkably like him.

Touch, See, Feel, Move:The Brookwood Community in Texas and the Autism Epidemic

Thank you to Leigh Attaway Wilcox for allowing us to highlight this article. To read the full article, please click over to AutismSpot.com. 

By Dan E. Burns

“We don’t just believe in miracles,” my guide told me, “we rely on them.” White-haired and in her eighties now, striding ahead of me cell phone in hand, my guide, called “Me-Maw” by some of the residents who to flock around her, prefers to remain anonymous.  “I didn’t build this wonderful place,” she explained. “It’s God’s doing.”

She opened door after door as we made our way through clusters of busy citizens in the ceramic workshops, gym, natatorium, and clinic to a fine, on-campus restaurant near the gift shop and gardens of The Brookwood Community, a 495-acre residential/educational village designed to enhance the lives of adults with disabilities. Brookwood provides opportunities to learn, to grow socially, emotionally, vocationally, spiritually, and to contribute to society. That’s the vision. And for most of the 120 residents here, including those with autism, it seems to work.

And “work” is the keynote. Stained glass windows in the non-sectarian chapel portray hands decorating ceramics, potting seedlings, shaping clay.  These are some of the community’s enterprises, which also include dozens of greenhouses, swards of poinsettias, bluebonnet place settings, and a hat factory. One measure of their success: Brookwood Community produces nearly $5 million a year in enterprise income through sales of merchandise created mostly by its citizens. That goes a long way – though not all the way – toward the covering the bills. Brookwood is a private pay facility, but most of the citizens are on scholarships. The community accepts no government funding. How do they manage? Like many other teachers, researchers, and parents, I’d come in search of the lessons of their success.

Brookwood came into being through the efforts of parents, volunteers and donors who recognized that there are 30 million adults with functional and intellectual disabilities in the United States. Due largely to the autism epidemic, “DD” (Developmentally Disabled) adults are among the fastest growing segments of society, a national challenge. As father of a 24-year-old son with autism and chair of the Autism Trust USA, I’m keenly aware that a tsunami of young adults with Autism Spectrum Disorder is surging through the school system. When they graduate, we’re going to need a lot of places like Brookwood in central Texas and beyond. How to replicate the model? “We’re working on that,” my guide told me. “We don’t have all the answers. One thing we know for sure: if God is your co-pilot, you’d better switch seats.”   To read the entire article, please click into The Autism Spot. 

Dan E. Burns, Ph.D., is the father of a 24-year-old son on the autism spectrum and the author of Saving Ben: A Father’s Story of Autism. Dr. Burns is Adult Issues Liaison for AutismOne. He chairs The Autism Trust USA, (www.theautismtrustusa.org), a 501(c)3 charity focused on empowering parents to organize communities where their ASD children and others can live and work, enjoy life, continue to heal, and give back to society.

 

"What Will You Do For Autism" Asks Iowa Boy to Each GOP Candidate

By Kim Stagliano

Our good friend Lin Wessels and her son Sam have barnstormed Iowa to meet and greet the GOP candidates.  Below, Sam asks them what he or she will do for autism as President.  We need to do something like this at every event. Ask tough questions. Demand hard answers.    When people see my girls, spend a few moments with them, the disconnect of their age and beauty compared to their ability to speak and interact makes grown men weep. I kid you not. The glossing over of the real hardship of autism, even by the well meaning, has contributed to the lack of alarm Anne Dachel writes about every day. Despite the difficulty, bring your kids to meet the political candidates at every chance. Hold up a sign, holler at the top of your lungs, plunk yourself in front of a TV camera. It gets easier every time.  We can make a difference. Let the children lead the way.

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Washington Post: "No one has real answers. They didn't then, and they don't now."

Managing Editor's Note: Anne writes about author Susan Senator's recent experience with a son who has "aged out" of school services and the difficulty she faces in crafting a safe, meaningful adult life for him.  Susan is a good friend of mine and has been a force for her son Nat's school services  and now, adult programs.  Her novel DIRT: a story about gardening, mothering, and other messy business is a great read - and deftly weaves the family dynamic of husband, wife marital strife and siblings when autism is in the house.  Check it out at Amazon in paperback and ebook. Anne Dachel has been screaming from the rooftops for years "The adults are coming! The adults are coming!" and few have listened. This is an area where we can all agree - our kids will need services and care - most of them for the rest of their lives.

By Anne Dachel

Washington Post: "No one has real answers. They didn't then, and they don't now"

Washington Post: Tiger Mother to an autistic son

Albuquerque Journal: Mother's Fight for Autistic Son Never Ends By Susan Senator

This story started with the Washington Post and it was picked up by the Albuquerque Journal. Susan Senator talked about her mission advocating for her son now that he's aged out of the school system.  It's mammoth task and she's had to write her own job description. 

It brings back so many memories. My son is 25. How he survived in school until I started to homeschool him, I'll never know. In the second grade, the school system got a psychologist to come from Minneapolis (a hundred miles away) to figure out what was the matter with this weird acting kid. She told us, "Your son has autism. I don't know if he'll ever be able to live independently or hold down a job. We don't know much about autism--it's such a rare disorder. There's probably not another child in Chippewa Falls who also has autism."

Chippewa Falls is about 13,000 people.

It was devastating. I was totally on my own-no one knew anything. I knew lots of teachers, being one myself, and they couldn't help me.

I had to develop my own curriculum.

When John was diagnosed with autism I told his speech therapist the news and she said that she didn't believe it. She told me that she had met an autistic child once and he was nothing like John.

NOW, almost 20 years later, there are two other autistic children in this neighborhood. Every school has their share of autistic students. I'd have to be a complete idiot not to believe that something terrible is happening here. Why are we pretending this is normal and acceptable?

Here's what Susan Senator wrote:

I'm tired of being called brave. But being the mom of a deeply autistic young man of 22, I can't avoid it. Because I survived. Ever since Nat's birth, in the Autism Stone Age of 1989, I have had to be a Saber-Toothed Tiger Mother - or at least pretend to be one. From finding the right doctors to getting my town to do right by him, to also doing right by my other two sons, I have always had to be strong - or feign strength. What to expect when you're not expecting autism? No one has real answers. They didn't then, and they don't now. It has always been up to my husband and me.

I never thought that figuring out autistic adulthood would be the same way. Now that Nat has finished school, I feel like I am right where I started, the diagnosis days: grieving, confused, panicked. I'm sad because I miss the comfort and safety of the old routines.

The other thing I hear a lot is that Nat is an angel, closer to God than others, here to teach me something. No, he's not. He is just a complex young man. He's not a spiritual messenger or a puzzle. The adult-services system, or perhaps the lack thereof, is the puzzle.

Helping Nat have a decent adult life is our family's greatest challenge - not Nat himself. We want him to have a life with something to do: a job, volunteer work; a place to live safely, cared for; days with a rewarding rhythm. These are things I've been working on since he was a teenager - along with his school. Those teachers had Nat working at Meals on Wheels by 14 and at Papa Gino's by 19.

Now Nat is transitioning to adulthood, he is finished with public education services, and he begins navigating the far more complex adult-services system. I've done everything "they" tell you to do. I attended workshops, seminars and conferences. I pushed to get Nat funding and to qualify for whatever programs might help him live as independently as possible. I know I can't afford a staff person myself, nor will I live forever.

I did my homework. I visited an adult group home before Nat graduated and did not like what I found. Care was adequate but lifeless. Some of my friends' children had it even worse: from regularly missed appointments to soiled, unchanged underwear. We've all learned that adulthood can be abysmal for kids like ours. And yet without the programs we've got - troubled though they may be - we have practically nothing. I cannot fathom what would happen to all of us without programs such as Medicaid and the other gossamer-thin safety nets.

It dawned on me recently that I am going to have to do more than act tough and tireless: that I have to become what they say I am. Because I have to face the fact that no matter how hard I push, we still may not end up with a good situation for Nat. If only there were a waiting list for a stable adulthood experience like those to get into the good autism schools. I know how to be on those.

I've tried for the past year to put together my vision for Nat: a group home of my own, with like-minded families and staff that we help choose. And every time I get close to succeeding, some piece or another does not fall into place. You can't get funding until you have a group. You can't get the group together until you have a house. You can't get the house until you have the funding.

And so, on top of all the emotional upheaval, Nat's turning 22 is a Catch-22. Funding is scarce, and the programs can be iffy because of it. As always, there is no one to ask; every expert and professional has a different story. In the end, I'm figuring it out as I go, only now I am no longer a young mother.

I posted this comment:

Susan Senator tells us exactly what's out there for young adults with autism. It's an abyss.

Christmas, Pre and Post Recovery, and the Struggles of Managing Recovery

By Heidi Noyer

I have identical twin boys.  Their world today is very different than their world was a few years ago.  Pre-recovery, all they got for Christmas was books.  It was all they wanted.  I'll never forget their 3^rd Christmas.  As they came down the stairs Christmas morning, they focused on the large stacks of books.  They didn't just like any books, they liked the books that were about learning to read, write, and do math.  They yelled, "Books!" with excitement, and then tore through the stacks as if they were the happiest children in the world -- getting just what they wanted for Christmas. 

I suppose one would be wondering, "What's so bad about that."  Well, the bad news is that their world consisted of only letters and numbers.  Caregivers and relatives would complain how they would not respond to their name, nor recognize them.  At the store, they would point to numbers, while ignoring the toys.  At home, they would sit for hours at a time, exploring books.  The only attention they gave to toys, were to line them up.  The only exception was electronic learning toys.  They obsessed over them to such an extent that they were able to use these devices to teach themselves to read, write, and do math.  They would write a sentence in perfect manuscript or incursive, such as, "I want a cookie."  At first, I thought my children were just geniuses, but. . . . . even though they could write complete sentences, their speech consisted of a very small amount of words.  They would approach me and say, "A cookie," or "A drink."  When I asked them to say the sentence, "I want a cookie," they would cry instead.  I had to admit to myself, that they, too, were part of the current autism epidemic. A local psychologist diagnosed them both with PDD, NOS.

They were 3 years and 3 months at the time recovery efforts were started.  They started responding right away, but slowly.  They barely made it into regular education classes.  They were potty trained just a few months before it was time to start Kindergarten.   After a few weeks of school, I was contacted by an Assistant Principal and informed that my children had difficulty with transitioning, and that their obsessions and meltdowns were creating doubts amongst their teachers that they would be able to continue in school.  Recovery treatments were stepped up, and they were able to continue in regular education classes.  Today, they are in the 2^nd grade, and treated by school personnel as if they are neurotypical.  Most days they do well, but there are still some meltdowns.  Recovery is not absolute in my family.  Those last few symptoms seem to be stubborn, fading back in from time to time.  Just when you think they may be able to tolerate a reduction in recovery treatments, a symptom will flare back up.  Thus, they are in managed recovery which has it's own set of stresses and uncertainties. 

(Here are the boys last week in their holiday show.)

Just Look in the Lost and Found

By Dan E. Burns

My life was touched with grace, to my surprise, twice this week.  My 24-year-old preverbal son with ASD, Ben, is on the wait list to have a foreign body removed from his ear.  When the surgeon’s scheduler called this morning to give us the first available date -- 5:30 PM tomorrow  -- I told her I was concerned about the no-food-or-drink-after-midnight rule.  “Because,” I added, “of his autism.”  After a brief hold, she got back to me. “Mr. Burns, I talked to the doctor, and you are scheduled for noon.”  I thanked her.  “No problem,” she said.  “I have an autistic nephew.  I know how difficult it would be for Ben to be hungry all day.”

On errands, we parked at the superstore and Ben ran ahead, vanishing.  He could have been anywhere, avalanched in the crowd.  I asked a young clerk to call security, mentioning my son’s ASD.  She flashed a message to the manager, who called groceries and electronics.  “I have a cousin with autism,” she volunteered.  “He’s five.”  Within moments two staffers were walking Ben back to me.  One had a youngster on the spectrum.  I thanked the staffers and apologized to the manager for the inconvenience.  He shrugged.  “Happens all the time.”

This is a kinder, gentler world, in my experience, than the one Ben was born into.  There was not a hint of the impatience, blame, panic, and miscommunication – “He’s what?  Artistic?” – that would likely have characterized this little drama fifteen or twenty years ago.  In fact, it was hardly a drama at all. 

Nonverbal child with ASD loose in the store?  It happens all the time.

Dan E. Burns, Ph.D., taught Communication courses as an adjunct professor at Southern Methodist University, the University of Texas at Arlington, and the University of Phoenix. In 1990 his third child, Benjamin, was diagnosed with autism. Burns is the author of Saving Ben: A Father’s Story of Autism. He serves as Adult Issues Liaison for AutismOne, and he chairs The Autism Trust USA, (www.theautismtrustusa.org), a 501(c)3 charity focused on empowering parents to organize communities where their ASD children and others can live and work, enjoy life, give back to society, and continue to heal.

Holiday Hopes Throughout the Year

By Lisa Dea

Dear Santa,

It’s been a while since I’ve written to you, well, at least for myself anyway.  I’ve been on a letter campaign of late without much success at peaking anyone’s interest, and I’m hoping you can help.  The Easter Bunny told me he was too busy with paperwork , but after many letters and filling out several forms in triplicate, he agreed to finally meet with me.  He listened and nodded appropriately, pasted on a sympathetic visage to accompany his glazed over eyes and then told me there was nothing to be done about it and asked that I stop writing. 

I tried having a couple of teeth pulled so that I could get the Tooth Fairy’s attention…no cost is too great if it will help find the answer.  She said she could help, that she knew what to do.  It was exactly what I had hoped and dreamed for, it was perfect…but it would cost a few more teeth.  I willingly provided them, again and again and again, but to no avail and no answers.

I bumped into a little green leprechaun by the side of the road the other day and told him my dilemma, but he said I’d have to find his pot of gold at the end of the rainbow in order for him to help and, well, we all know how that turns out.

Officially, Frosty the Snowman was willing to help, but he’s lost his top hat, so he had no real power.  Privately though, he confided that Jack Frost had been lobbying Mother Nature to reject my request, otherwise he wouldn’t make any snow this winter.

I didn’t even try appealing to the Wizard council, since most of them can’t be bothered to learn new spells to help others, and those that do are being cast out and stripped of their powers.

I had high hopes that Cupid would help, though.  I thought his compassionate nature, search for knowledge and objectivity would be most helpful in my quest.  But, as it turns out, he has a bit of a mean streak and was out on his annual witch hunt when I stopped by.

And so that brings me to you Santa, my last hope…

I’m not really asking for much.  In fact I’m not even asking for me, you see, it’s for my son and all the other mother’s sons and daughters, for the brothers and sisters, nieces and nephews, friends and strangers.  My wish is relatively simple when you compare it to all your other feats…hiding a castle and all its elves from those prying eyes in the sky, flying around the world delivering millions of presents in one night, not to mention the whole sliding down a few chimneys trick.  My wish will only require a bit of magic, and some perseverance, but I promise you, it will be the best gift you have ever given, at least in my eyes. 

All I want for Christmas, Santa, now and for every Christmas to come, is a cure for autism and all the pain it has caused.

Wishing you a Merry Christmas,

A loving and toothless Parent.

P.S.  If you grant my wish, you’re job security will increase exponentially as 1 in 90 children who might not have known you existed before will wake up to the magic that is Santa.

From Truth to Treatment: Autism One Generation Rescue 2012 Conference Registration Opens This Week

Use your Hanukkah gelt or stocking stuffer cash for a trip that's sure to make Chicago "your kind of town." Autism One is a whirlwind of friendship, support, knowledge, partying (what, you think we're all business?) and energizes attendees to seek answers for loved ones throughout the year.

• 100+ SPEAKERS/PRESENTATIONS
• 20+ TRACKS
• 5 DAYS
• 3 KEYNOTES
• 5 FEATURED

How did you know that your child could be helped? Someone told you the truth. After a decade of AutismOne's service to you, your child, and your family, that is what the AutismOne/Generation Rescue 2012 Conference continues to do -- present you with the truth . . . the truth that leads to treatment. It's the dawn of a new decade for AutismOne. It's the dawn of a new era for your child.

This year's proceedings include Nobel Laureate in Physiology or Medicine Dr. Luc Montagnier, best-selling author David Lender, and a major announcement we hope to make later this week. The conference registration fee has again been waived. There is a minimal processing/materials fee of $25, and those registering through February 15, 2012, will receive a coupon for three free digital lecture downloads from the 2011 video selection. There will be affordable childcare spots available to conference registrants on a first come, first served basis.

AutismOne is also pleased to announce the opportunity for you to make tax-deductible, year-end donations through our new donation button starting December 26, 2011. Please help us continue to help children and families far and wide through the many educational and advocacy initiatives of AutismOne, including the conference, Autism Science Digest, AutismOne Radio, and much more. Many thanks for your kind support. www.autismone.org.

The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.