Autism; Aging Out in a Covid Pandemic – Part I

"Aging Out" - A Mom Releases Fear Built Over a Lifetime. 

For years I have lived with fear. Fear that feels like a quiet hum; always buzzing on the fringe of my consciousness. Fear, I think every parent who has relied on educational and therapeutic support for their child's care can relate to. 

It is fear of what those of us in the developmental disabilities community calls “Aging Out”, and it’s our collective Boogie Man!

For most of our children there will be no ongoing education, no higher-level learning, no exciting jobs, careers, dating, independent travels, marriage or children. Like other kids they graduate from high-school with lots of congratulations and accolades for a job well done, but the words fall flat when they are sent home to nothing or lack luster day programs. 

Since his diagnosis, I imagined by the time he graduated from high school there would be a variety of viable educational, work and life programs for this growing population. That has not been the case. The pickings are slim and although many programs sound good and the brochures look great, underneath, today's programs are not much different than the day programs of the past.  That is why I see images of my son – who deserves to continue to grow and learn like everyone else – overweight, being driven around town in a white van, eating donuts and junk food walking with a colorful rope tied around his waist. The rope connects him to another person with developmental disabilities, who connects to another and this continues until the group forms a long line connecting them as they all walk shopping malls and assorted destinations with no real purpose. The thought of that being his life once he “aged out” is what I have been afraid of since he was diagnosed with autism 20 years ago.

But few things happen exactly as we imagine, including “Aging Out”. Thanks to Covid 19 Nick effectively aged out sooner than planned.  But it wasn’t just our household facing this drastic shift, the entire world was sent home, not just Nick.   And instead of going from graduation to no supports, last March we were thrown into a different kind of chaos eliminating school, friends and supports over a 5-month period instead of overnight.  

Instead of his school experience and supports ending the summer school concluded, Nick went from school to home, to online school (not useful for Nick) to online graduation, to online summer school, to nothing. Amidst the chaos of Covid all families were stressed with change, everyone was home, and there was nowhere for him to go because everything was closed. So instead of “Aging Out” being the biggest concern in my world, it was just one of them.

 I was not alone is sudden change, which in a weird way seemed to soften the impact of the moment and what was to come. I was just like every parent in the country struggling to figure out what to do with children who were suddenly home all day!   I was like all the other parents struggling to be their kid’s teacher, coach and playmate while trying to work myself in a Covid-19 world.  I don’t mean to be a jerk, but there was something oddly comforting about knowing I was not alone, because in a way all of our kids had just “Aged Out”, even if only temporarily. Ironic that families around the world were experiencing the pain and panic I knew was coming, but they never expected.

I however, did have an advantage over most parents because this is not my first fear rodeo! This phase mirror’s the early stages when Nick was diagnosed with Autism. While other 2- and 3-year old’s were going to preschool, I was sent home, with my nonverbal 2-year-old kiddo in tow, to figure out our life on our own. Armed only with the knowledge that autism was a lifelong developmental disability with no known cause or cure that would require lifelong care. I remember feeling like I was staring into the abyss with no idea what to do, where to go, what would come next or how we would handle it.  It’s been a long journey from diagnosis to aging out. Yes, I am fatigued, but I am so grateful to have made it here. As I stare down the tunnel of what’s next, I am hoping the bright light, is a flashlight to guide me and it is not a train.

Parents of most neurotypical children anticipate a life after high school graduation for their children as a stepping stone into the future. A future, commencement speeches describe as filled with purpose, hope and optimism. That is not the reality of most families raising children with autism and other developmental disabilities. We don’t experience graduation as the start of a new chapter filled with exciting possibilities, purpose, college or work, dating, marriage and children. Instead the landscape for life after high school for our children looks like the end of their best times, a downhill slope offering little or no hope for the future.

Why? Because the world does not value investing in their ongoing education or building a future for our children.  I took Nick off the diploma track to delay this moment as long as I could. Leaving the diploma track meant he could stay in school until he turned 22. Staying in school provided an opportunity for him to continue to learn, while staying engaged in a safe regular routine with his friends for as long as possible. I took him off the diploma track while he was in middle school specifically to postpone the inevitable; the day school would end and with it  options for an engaging fulfilling life. 

Since his diagnosis, I imagined by the time he graduated from high school there would be a variety of viable educational, work and life programs for this growing population. That has not been the case. The pickings are slim and although many programs sound good and the brochures look great, underneath today's programs are not much different than the day programs of the past.  That is why I see images of my son – who deserves to continue to grow and learn like everyone else – overweight, being driven around town in a white van, eating donuts and junk food walking with a colorful rope tied around his waist. The rope connects him to another person with developmental disabilities, who connects to another and this continues until the group forms a long line connecting them as they all walk shopping malls and assorted destinations with no real purpose. The thought of that being his life once he “aged out” is what I have been afraid of since he was diagnosed with autism 20 years ago.

But few things happen exactly as we imagine, including “Aging Out”. Thanks to Covid 19 Nick effectively aged out sooner than planned.  But it wasn’t just our household facing this drastic shift, the entire world was sent home, not just Nick.   And instead of going from graduation to no supports, last March we were thrown into a different kind of chaos eliminating school, friends and supports over a 5-month period instead of overnight.  Instead of his school experience and supports ending the summer school concluded, Nick went from school to home, to online school (not useful for Nick) to online graduation, to online summer school, to nothing. Amidst the chaos of Covid all families were stressed with change, everyone was home, and there was nowhere for him to go because everything was closed. So instead of “Aging Out” being the biggest concern in my world, it was just one of them.

 I was not alone is sudden change, which in a weird way seemed to soften the impact of the moment and what was to come. I was just like every parent in the country struggling to figure out what to do with children who were suddenly home all day!   I was like all the other parents struggling to be their kid’s teacher, coach and playmate while trying to work myself in a Covid-19 world.  I don’t mean to be a jerk, but there was something oddly comforting about knowing I was not alone, because in a way all of our kids had just “Aged Out”, even if only temporarily. Ironic that families around the world were experiencing the pain and panic I knew was coming, but they never expected. 

I however, did have an advantage over those parents who had not been caring for their children 24/7, because this was not my first fear rodeo! I had experience providing all of his education at home, and I since my son didn't have friends, or playdates I was used to providing his social life. Who, know that would be an upside! But it was because this phase of our journey mirror’s the early stages when Nick was diagnosed with Autism. When I was sent home armed only with the knowledge that autism was a lifelong developmental disability with no known cause or cure, that would require lifelong care. While other 2- and 3-year old’s were going to preschool, I was home with my nonverbal 2-year-old kiddo trying to figure out life on our own and learning how to be everything to my child. 

I remember feeling like I was staring into the abyss with no idea what to do, where to go, what would come next or how we would handle it.  
It’s been a long journey from diagnosis to aging out. Sometimes moving unbelievably fast, and other times painfully slow.  But we made it. We are staring down the tunnel of what’s next. Praying and hoping the bright light at the end, is a flashlight to guide us and it is not a train.
 
 

 

How Hollywood Got Autism Awareness Month All Wrong…

I am so grateful for every person who used their platform to bring awareness to autism. Awareness was the first step to improving the lives of individuals and families impacted by autism. I fought for awareness and now it's time for a new verb.

This is not a dis on anyone or anything, it’s just I've been living with this same message for 17 years. And, as I was thinking what to say for Autism Awareness month?  What needs to be said? What would make a difference? I just kept coming up blank, then it hit me “It’s not about awareness anymore”.  We are aware now!  We have made progress and it’s time to get a new slogan and new mission that changes the lives of all the people our society is now “Aware” of.   And I hope Hollywood will get on board and embrace a new campaign.Let's face it, now we need to be about action, next steps. Maybe we begin with a new slogan; Autism Inclusion Month,  or Autism Action Month, or Autism Support Month.

I’ve been on this journey for 17 years now, much of which is documented in this blog.  If you are one of the people who have read this blog through the years you know it begins with my testimony to the California Senate Blue Ribbon Commission when I shared how having a young child with autism was a nightmare families could not wake from.  Getting an early diagnosis was almost impossible as most pediatricians did not know the signs, and if you could not afford the $3,500 private developmental pediatricians wanted for assessments you were probably flat out of luck.  Then if you were fortunate enough to be told your child does have autism “A permanent lifelong disability for which there is no known cause of cure” they just sent you home to sort things out.  Unlike any other major illness or disability where families are embraced by the system and provided with protocols of care and resource’s families living with autism were abandoned by the system.  With no skills or tools families were just sent home to care their child – who typically required 24/7 support, cope with their grief and do the full-time job of trying to navigate complicated systems of care to find hope!    A devastating reality resulting in a 86% divorce rate for families, isolation, depression and financial ruin because the needs of an autistic child were so intensive parents could not work and care for their child.

This was the unimaginable fate of so many families due to lack of awareness.  But as awareness improved and 1 in every 64 children had a diagnosis of autism, things changed and today most people know about autism.  The result physicians have been trained, therapies are available, states have funds for early diagnosis and intervention.  A great accomplishment!  And now it’s time to move on.

Today most funds for autism are earmarked for early intervention, doing little for those individuals with autism who are now in middle school, high school, and aging out of the system.  We have done little to improve our social settings to include families and individuals with autism. Today as I think about Nick’s upcoming birthday, yep he’s an April kiddo born in Autism Awareness Month!  I am not optimistic about his future, in fact, I’m the opposite.  I am scared for my son and his sister who will inherit the burden of care.  And this is how I feel as the parent of a kiddo who has made incredible strides in his independence as a result of early intervention.

17 years into this diagnosis we live in the social isolation today, as we did when he was diagnosed. This year like all the other years, he has not be invited to any typical child’s birthday party and his birthday party will be attended by adults and perhaps a few others on the spectrum.   We still go into the community and people pretend not to see us, or they look at Nick in fear when he makes noises and jumps suddenly.  But today my most crushing reality is once Nick ages out of the school system – unlike his typical school peers who will go on to jobs, vocational programs, colleges or universities – there are few viable options.  The image of “Wall walkers” comes to mind. Special needs individuals being driven around town in white vans making mindless trips to the mall, the 99 cent store, maybe Target.  Or for a treat a trip to McDonald's where they are all seated away from the other customers who are uncomfortable or a theme park where they connected by matching shirts or string that attach them like cut out dolls, dressed in clothes that make them look unloved and allowed to wear toddler hats.  That’s what families have to look forward to after years of “Awareness” 

So, yes awareness have improved. Early intervention is funded. Kids are being diagnosed and families are being lead to believe the future will be better.  I’m here to say, that is perhaps the cruelest part of this whole journey; to work so hard for years expecting “better” to find that while your child was growing up, and you were doing all you knew to do, the system was not keeping up with you and one day you would end up right back where you started, alone with a young adult who still needs 24/7 care and nowhere to go.  

That’s reality, and in some ways, it’s a more crushing blow than the first, because back then in the there was still hope.  And as a society, we were still more forgiving of an adorable autistic toddler, no matter how inappropriate his behavior, than of an autistic adult.  

That’s why it’s time to move on and work on directly impacting the lives of families living with autism, beyond ages 1-5.  It’s time for “Autism Inclusion Month” and just like awareness it begins in our communities, it begins with us, simple kindness something like this.

Let’s start an inclusion revolution. 

Here are a few ideas.

When you see an individual with autism – Say hi, even if they don’t say hi back.

Invite families you know who are living with autism to your parties, to your homes for dinner.

Help parents who are caring for an individual with autism; drop off a meal, a Starbucks, a bottle of wine.

Invite a mom who is caring for her child with autism over for a cup of tea,  volunteer to run an errand or any gesture of kindness you would give to any neighbor or friend in need.

Then for those of us who are the ones living with autism, we need Autism Action Month. A month where as a community we come together to push the bar forward.  A month where we unite in large numbers, make our voices heard, and advocate now for system change including programs and funding that will support our children after Highschool and insure there are supports in place for the inevitable when we are no longer here to care for them.

In Preparation of Nick's Transition IEP - Facts Make all the Difference

Nick's Transition IEP is coming up and my goal is to get his entire team committed to making sure he leaves school with skills that will increase his independence. He's been in school for a long time now, and my emphasis is NOT on teaching him more in the classroom, rather I am focused on helping him generalize the skills that he has learned, in the real world. 

Nick going to sing in the choir
Holiday program! 

At first the school would not build a custom IEP for him that meant him being out of the classroom, which we corrected in mediation. As a result he is only in his special day classroom for 1.5 periods. The remainder of the day is spent working in the the cafeteria, participating in Choir, being a teachers assistant for a PE coach, working on the school farm and participating in ceramics where he also assists the teacher. This plan insures that Nick has to interact with various people in various settings and is given the opportunity to apply what he has learned in the classroom to get a job, and feel good about himself. 

That said I thought it was important to give everyone involved in the process a full perspective, because if I've learned anything, I've learned that I can take nothing for granted. You might want to share this too. It's an easy overview and it makes the case for every kiddo who wants to be more independent. 

Autism Spectrum Disorder (ASD) is the fastest growing developmental disability in the

United States. Beginning in the late 1980’s, autism diagnoses began to skyrocket,

now affecting 1 in 68 children in the United States: a 1350% increase since 1993,

according to the Centers for Disease Control and Prevention. This makes ASD more

common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An

estimated 1.5 million people in the U.S. and tens of millions worldwide are affected by

ASD. These children are now becoming young adults. About 50,000 young adults on the

autism spectrum turn 18 every year.


A Life Long Developmental Challenge

Addressing the epidemic of aging young adults with autism is a significant challenge for

families, our state, and our country. Autism is a life long developmental challenge. In the

coming decade as many as a half million children with autism will reach adulthood. Yet

very few residential and vocational development programs exist for them. The options

that do exist often have waiting lists of 8 to 10 years. Frequently, adults with autism are

placed in facilities or programs that are neither designed nor equipped to handle their

specific needs.

It's estimated that there will be a 300% increase in the number of young adults needing

residential services by 2020 with continued increases each year thereafter. These young

adults are aging out of the education system beginning this year.

No Pathway to Work

The growing demand for employment programs to support those with ASD has reached

a crisis level. Young adults with ASD in the U.S. workforce are scarce: 90% of people

with ASD are either unemployed or under-employed. Nearly seven years after graduating

from high school, 1 in 3 young adults with autism lack a college education, technical

training, or paid job experience. Only slightly more than half of young adults with autism

have ever worked for pay since leaving high school, according to a survey published in the

Journal of the American Academy of Child & Adolescent Psychiatry. Roughly 85% of

those with a moderate disability have worked and just 12% of the most severely disabled

have work experience. By comparison, young people with emotional disturbances,

learning disabilities, or impaired speech and language were roughly five times more likely

to have held a job. People with intellectual disabilities are twice as likely than those with

ASD to have been employed since high school.

Best States for "Aging Out"; From Promoting Independence and Productivity to Quality of LIfe

Seems to me California would do pretty good for 2 - 6 year olds. Then we drop a notch from 11 to 15, and another drop from16 to 18. Then we plumet to the bottom of the list when our kids "age out" between 19 and 22.  Sad there's so little in place in California for our young adults. 

The End of A Journey, Son's Aging Out - A Future Fading Away

The End of A Journey, Son's Aging Out - A Future Fading Away

As I walked into summer school with Nick this morning I was hit by a wave of grief, and I didn't know what it was, or why, or where it came from.  I froze, held back tears and struggled to get my balance. I took a deep breath, and then I got it. I was face to face with the end of a journey. Next year Nick will be a senior and all that we have known; in the way of structure, things to do, support and plans based on the possibility of the future, the gift of the unknown will be gone. The future we fought so hard to make as bright and potential filled as possible, is here, and for all of our accomplishments and hard work, my kiddo has arrived at this place, still fully dependent on others and I'm so sad. 

Nick will be a senior, but he won't really graduate, because he's on diploma track. He'll stay in school somewhere for a few more years, but only because there are no options.  If I can't find a better choice for him, he'll be the 20, 21 and 22 year old on a HS campus, the special ed kid who's stuck, the school mascot who stayed behind after the party was over and the image makes me sad.  

Please know I am so grateful he will still have somewhere to go, that he has options, but I am also sad.  At this moment I feel like confirmation that a little dream (hope, prayer or denial) I had deep inside that he would have more, unexpectedly just up and died today! 

I know I have to find another dream, another perspective and I'll get my wind back. Just had to share, to be heard, because I know so many of you appreciate my positivity and a few have asked if I ever just loose it?  The answer is yes, I do. Today I did.  I'll pick myself up, and I'll be good until the next time, the next wave, the next visit with the grief that keeps on giving. 

Watch...Aging Out Crisis NBC Tonight!

NBC'S DATELINE INVESTIGATES AUTISM'S 'AGING OUT' CRISIS IN "ON THE BRINK" Kate Snow Shares Powerful Stories Of Young Adults Living With Autism And Their Families' Desperate Search for Specialized Support Dateline's "On the Brink" Airs Sunday, April 12 at 7pm/6c NEW YORK - April 9, 2015 - On Sunday, April 12 at 7pm/6c, NBC's Dateline will air "On the Brink," a powerful new report, three years in the making, that puts a spotlight on autism's 'aging out' crisis. Over the next ten years, an estimated half a million young people with autism will turn 21 and 'age out' -- losing their eligibility for help through the education system. The stability and structure they have had nearly their whole lives will end, and there's no equivalent support system to take over. "On the Brink" takes an unprecedented look at the lives of young adults with autism and the extraordinary measures parents take to provide their children with specialized services and a better future. Over a three-year period, Dateline chronicles the raw and emotional journeys of two New York-based young adults with autism and their families, as they transition from graduation to adulthood and make a leap towards an uncertain future. NBC News National Correspondent Kate Snow interviews two mothers who devote their lives to caring for their sons and helping them find a voice. Snow shares their heartbreaking stories and the tremendous challenges of navigating a broken system of programs that will allow their sons to progress in life. "On the Brink" documents both families' ongoing fight to help their children and revolutionize the way autism is perceived in the U.S. "We spent countless hours with these two families for over three years and it truly was an eye-opening experience," said Snow. "It's one thing to know that services end for people when they turn 21, and it's another to see it play out. We are grateful that both families allowed us into their private lives, so we are able to share their compelling stories and shine a much-needed spotlight on this important issue." Snow also speaks about concerns surrounding the 'aging out' process with Sharon Lewis, Senior Advisor on Disability Policy to the U.S. Secretary of Health and Human Services, and Linda Walder, Executive Director of the Daniel Jordan Fiddle Foundation, a non-profit organization devoted to studying the issues facing adults with autism. Early excerpts from Snow's interviews will air on TODAY and NBC Nightly News, Friday, April 10. Dateline's "On the Brink" airs Sunday, April 12 at 7pm/6c on NBC.