Autism Acceptance and Aging Out
By Natalie Palumbo
As a younger sibling of a 21 year old young man with autism, I was recently asked to give my perspective on a story about services for people with autism beyond high school in Vermont, as shown in this story from April 27, 2012.
First of all, I think it’s wonderful that programs are being developed beyond high school to further train and improve quality of life. But, my family lives in South Carolina and I can tell you that unless more states adopt this philosophy, the rest of the country remains at a standstill. People with low and non-verbal autism, like my brother, will age out of high school without any services available to them. In addition, the increased occurrence of autism will place an exceptional burden on those states with services as more and more families seeking support move where they can access them.
It bothered me that in the article, the increase in autism is mentioned with no concern. The writers at the Brattleboro (VT) Reformer talked about the expectation that services will increase along with the numbers, but there are no guarantees.
I would have liked to know more about Ben Davis and his mother, Lora Barrows, who were talked about in the article. It seemed that the piece was too brief for me to make a personal connection. I wanted to identify with their story, but I didn’t get enough information to relate my life to their experience.
I was struck by the inference that an autism diagnosis brought relief. “Before Lora Barrows' son received his diagnosis of autism spectrum disorder, the family's life was filled with confusion, frustration and uncertainty.”
My brother was diagnosed with "severe communicative disorder with autistic tendencies" at age three and officially given an autism diagnosis at age five. When my mother first heard the word “autism,” only three references came to mind, the Who’s Rock Opera “Tommy,” the little boy Tommy from St. Elsewhere, and Rain Man. My brother Anthony didn’t resemble any of these characters. I witnessed doctors being blasé about their lack of knowledge, some weren’t interested in helping, and only an exceptional few let my parents bring them research. We never felt like we had any real understanding of what the future held.
In our experience, the confusion, frustration, and uncertainty lasted long after my brother’s diagnosis. We struggled to help him with daily living, and we never stopped trying to improve our quality of life as a family. Fitting in was never possible, and faking it was never easy. We put on our best face, and did our best job.
The article further stated that, “The diagnosis was a relief, in a way, Barrows said, because it at least allowed her to begin lining up services for her son and the diagnosis helped her get a better understanding of what the near future held.“
Getting services for my brother wasn’t easy. They expected Anthony to behave like someone “speech delayed” rather than someone with low verbal autism. They expected him to understand language receptively, yet not able to talk. What they got was an energetic boy who had sensory integration issues along with expressive and receptive language severely and equally delayed.
Anthony has always been beautiful. Because he looked “normal,” they expected him to act normal. Many people in and out of school accused our family of making excuses for Anthony because he was physically perfect. They did not see a disability, so they did not expect a disability. We had to prove our credibility all the time, so we did.
The story from Vermont doesn’t give us enough personal information. The strife of the family is minimized to only a few sentences. I can’t determine if progress towards low and non-verbal people with autism are even being addressed when I know so little about Ben, the person mentioned in the story.
It makes me question if needs for people like my brother are actually being addressed. Although, I have to say I am encouraged that Vermont recognizes a need for services beyond high school. As Anthony’s only sibling, it makes me more hopeful.
However, why isn’t anyone asking the big question, WHY?!
Why is autism on the rise? What are the common symptoms among kids with autism? What do they mirror? What are the possible connections? Why is there more emphasis on trying to disprove a cause than find a cause? Why is there this increasing need for services for a disorder that keeps growing?
If autism was food poisoning, people would DEMAND to know!
The article mentions “more and more public schools have developed programs to address the growing public health challenge, and high schools now are developing programs to help teenagers with autism spectrum disorders get ready for life beyond high school.”
What about the cases of low and non-verbal autism who can’t work or live independently? How will these families cope? Who will tell their story? The article also refers to “society’s growing acceptance and understanding of the disorder.”
For us, growing acceptance and understanding completely depended on the circumstances. When Anthony was unable to comply with socially acceptable behavior, society complained. Growing acceptance was not what I observed growing up. Friends, family, medical professionals, and teachers depended on my parents and me to help them understand Anthony.
Teachers could be nice, but they didn’t always understand what motivated Anthony. Sometimes they couldn’t grasp it. It wasn’t until Anthony got to high school that we found teachers and administrators that were helpful and understanding. We still needed to explain Anthony to them, but they supported our efforts at home. We worked like a team.
The article closes with an ominous quote regarding students aging out of services. "Sometimes families are not prepared for the transition and they go out in the morning to catch the bus, but the bus isn't coming anymore."
What if the bus passed you by?
This quote trivializes our lives. My heart just sank. So, ready or not, in the end the schools, just like the medical community, leave families like ours behind. How can that be acceptable with the number of people diagnosed with autism increasing exponentially? What happens tomorrow? Buses won’t be the only things disappearing. There will have to be family members who will need to become fulltime caregivers. First it will be the parents, and eventually siblings, should they be lucky enough to have siblings. I can only say, I’m grateful I exist for my parents, and especially for Anthony.
Natalie Palumbo is a high school student, younger sister to a brother with autism, and Contributing Editor for Age of Autism. Visit her art website at Deviant Art.
Natalie, that was phenomenal! I applaud your undying loyalty and tremendous resolve that your words so vividly portray in support of your brother, your family and all of the non-verbal autism community! Bravo!
You said: "This quote trivializes our lives. My heart just sank. So, ready or not, in the end the schools, just like the medical community, leave families like ours behind. How can that be acceptable with the number of people diagnosed with autism increasing exponentially? What happens tomorrow? Buses won’t be the only things disappearing."
You're right! Oh, so very right on! No, I'm afraid the buses won't and are not the only thing disappearing; life as our country once knew it is gone forever for every single person and their family that is affected by "autism".
The one or two professionals we have met along this journey that truly GOT my son made all of the difference in the world!! They helped him tremendously in redirecting the uneducated and unconcerned on his behalf. Professionals such as those two are few and far between. BUT, they alone did make a HUGE, immeasurable impact toward the positive.
So, what is the upside here? Well, it's nominal as you depicted so eloquently. Funding is not there, nor is there any visible effort to shift our attention and come up with solutions.
Do our legislators care? No, not really I'm afraid.
That leaves us with each other to come together and find solutions. Without lifting our voices as high as we can, we will struggle to garner enough support. Truly, organizing and mobilizing is our only chance bring in a much needed ray of hope and to light the path toward a solution. Non-verbal and other ASD individuals deserve a brighter future than what is currently being afforded to them and their families. It only takes one or two with a little common sense and just enough compassion to generate a positive influence.
It has come down to the families to make this happen, it would seem.
Many blessings to you and yours, Natalie!
Posted by: missed the bus | May 16, 2012 at 01:43 PM
Natalie thank you for your article.
I want you to know even in states like Massachusetts where day services are available, they are paid for mostly through Medicaid and are subject to strict medicaid rules. My son is in a "Day Hab" program with 14 other adults with a variety of disabilities and only TWO staff. They spend much of the day siting around doing puzzles, coloring, or chatting over coffee, things my son can't do or don't interest him.
In school he had phys-ed 45 minutes every day in a group with lots of interaction from the school staff.
At his day program he can go on the treadmill by himself.
In school he learned to cook, did wood working, did yard work around the school like planting flowers, tending to the school vegetable garden and mowing the lawn, again with lost of fun interactive support from the teachers and aides. He also had job internships at a variety of places including farms and a discount store.
At his day program he volunteers at two local churches doing very menial work like picking up church bulletins from the pews or picking up sticks from the lawn.
I have watched my son regress from a vibrant guy who loved every minute of school to someone who cannot wait for the van to bring him home from his program. he is antsy and agitated and loosing ground every day.
Programs need to be created in every state specifically to meet the needs of adults with Autism.
At this point I fear for his future.
Posted by: Jan | May 16, 2012 at 12:23 PM
Natalie you leave me breathless. As the great grandmother of beautiful special austic Daniel we as a family have and are living everything you painted such a verbal masterpiece picture of. If I could only keep one piece of all the info I have read it would be yours. No one no matter how well schooled has come near your explanation of what takes place in the world of a family who has special needs family members.The mental hurt from words and looks of those that are ignorant and uncaring for their fellow man. May the Lord continue to bless you and your love ones as you fight the good fight for all those like your brother need a champion. Natalie you like David,Daniel's sibling are CHAMPIONS .
Posted by: Janet Scaruffi | May 16, 2012 at 10:56 AM
A Children's March in DC, NYC and perhaps other major cities is what I'd like to see. As others have said the world needs to see our kids! The kids can carry signs like "I am the 1%- I have autism". , "I am not invisible, I have autism", "Autism is Undeniable", etc..
Posted by: Sarah | May 16, 2012 at 10:36 AM
"I can only say, I’m grateful I exist for my parents, and especially for Anthony."
Natalie, you are an amazing person. There's anger, but no bitterness in your writing. I look forward to following your installments here.
Posted by: First Do No Harm | May 16, 2012 at 08:50 AM
Reply to Ann , I like what you have to say about mobilising protests like the AIDS victims did, and lets make them internationally coordinated London, Paris ,Sydney , New York & Washington (and every where else )all on the same day , we know what causes autism , the authorities know what causes autism .
And that is why this is the fight of our lives .
Vaccines = genocide . I'm not interested in making green our vaccine - boycott the bloody lot of them - or better still make them mandatory for all the Royal Houses of Europe , for the fraudulent scientists , for the dumbass doctors , for Bill & Melinda Gates and all MPS and senators.
All I ever hear from our side is being well mannered in our protests, well there is nothing very polite about vaccine derived autism.
Posted by: NSSM200 | May 16, 2012 at 05:05 AM
Aids organized strong and loud marches in major cities and the occupy wall street organizing may day in all cities...we need to use social media to coordinate marches in every city....and occupy until our voices are heard and money is put to cure autism...and to cure it we first need to know what causes it! How do we mobilize autism speaks and coordinate and combine into one voice until heard?
Posted by: Ann andress | May 15, 2012 at 10:11 PM
Very good article, very insightful for one so young!
A man running for the state representative came by today. Our old one is retiring.
I think he would make a good one. He handed me a pen and then instead just shaking my hand, and saying vote for me and good bye he asked - what are you interesting in your state representative accommplishing for you in Frankfort.
Oh please give me an opening and I will take it ever time!
I do try to start slow and not look like nut.
TO my surprise he brings up diet???!!! He is on basically a low carb diet - no sugar and no white flour!
His mother has diabeties, he is concerned were it came from and why the weight is so hard to control.
He was interested in my husband's emory clinic dignosis of a ruined energy cycle after a vaccine.
He tells me the main problem with the area right now was drugs. He accepted my explaination that they may be self medicating that most might be bipolar.
I told him his running mate is interested in getting apprenticeships for kids coming out of highschool. He was familiar about that too and said his oppoent was thinking there was too much preparing for college and not other vocations. He said he was not sure were all the money was going to come from to do that though????
I told him about Somerset College was willing to take my son with epilepsy, tourettes, mild autism, speech problems and train him --- so maybe the frame work was already there in our community colleges and we just need more co-opes???
He was thinking, esp when I told him the new study out that said of all those with autism had nothing after graduation - no additional training and there was so many coming.
We had a very nice chat. I think I will vote for him. I also understand a state house representative is low - but maybe we need to start low and build up?
Posted by: Benedetta | May 15, 2012 at 08:10 PM
Thank You Natalie for being a meaningful voice for all of the non verbal siblings with autism. I believe your pieces carry extra weight because of who you are. Parents will always stay and fight for their children, and for low functioning children this will be life long. Siblings are in a different, more precarious position. All their lives, growing up with someone who has autism can take a toll on a child, how they view their family, and most of all how they feel towards the sibling that demanded all the attention and resources. It is not easy. No one would blame you if you grew up and the minute you graduated high school you left for college to try and regain your life and find yourself. Yet you are one of the strong few that chose to stay and fight, and effectively give your brother a voice. I am so proud of you as a mother, and a fellow human being. Please keep letting the world know about our non verbal children from someone who knows better than most - a member of the family. Because when a sibling has autism, let's face it - the whole family has it together. Thank you for making it real for those who don't know.
Posted by: Carolyn S. | May 15, 2012 at 07:56 PM
"Anthony has always been beautiful. Because he looked “normal,” they expected him to act normal. Many people in and out of school accused our family of making excuses for Anthony because he was physically perfect. They did not see a disability, so they did not expect a disability. We had to prove our credibility all the time, so we did."
is so very true and I feel like it's emotional abuse. We are being emotionally abused. And would you believe that even teachers with children with ADHD and Asperger's still believe this about the other children with ADHD and Asperger's. The ones that I am referring to in my community also don't seek biomed. So, just saying that the amount of people who blame and criticize because they see a "normal-looking" person, is extremely upsetting! And it's even worse when they have a special needs child, yet still deny it's a biological problem.
Posted by: Heidi N | May 15, 2012 at 06:16 PM
It was said that the reason for the Roman Empire's fall was that lead pipes were used to transport the drinking water. Spain's declining power was attributed to the gleaming white lead paint and the use of mercury to make mirrors. These countries' governments may or may not have known that these substances might eventually cause their civilizations to crumble.
Here the effects of those substances (lead and mercury) are known. And still nothing is being done.
The autistic population is growing and only the very fortunate parents are going to find suitable help for their affected adults.
Why is there no really big push to prevent and cure autism? It's because autistic individuals literally have no voice. They themselves cannot describe their difficulties.
When the AIDS epidemic hit the gay community banded together to mobilize everything they could, and the problem was addressed. Part of the reason why this kind of effort is not bearing fruit for autism is that the autism community is split. There is the group that thinks things can be cured with therapy. That group does not want to find the root cause. They only want to believe everything is genetic.
There is currently a push by Kathleen Sebelius to find a cure for Alzheimer's by 2025. http://abcnews.go.com/Health/government-aims-end-alzheimers-disease-2025/story?id=16351834
She should be talking about Autism and Alzheimer's. I firmly believe that Autism and Alzheimer's are closely related if not identical.
The huge difference in these two conditions is that Alzheimer's patients don't have a whole lifetime in front of them.
Posted by: Birgit Calhoun | May 15, 2012 at 02:23 PM
Just thought I would add this link here and see what AOA thinks of this:
Posted by: Concerned Mother and Skeptic | May 15, 2012 at 02:20 PM
Brilliant article, Natalie. Beautifully written, you ask all the right questions--the ones so many are trying NOT to answer-- AND you zero in on the facts.
With people like you writing about autism, we have hope.
Posted by: Taximom | May 15, 2012 at 01:13 PM
This is one of the best articles I've ever read on autism - And I've read A LOT. Thank you Natalie. I hope enough people listen to you and WAKE UP!!
Posted by: Nancy | May 15, 2012 at 12:50 PM
We are with you in your struggles Natalie as parents of an adult son with autism. He also has a loving brother who, like you, will do anything he can for him. The lack of services and LONG WAIT lists for the few programs that do exist will only get worse as the waves of autism keep rising with no end in sight.
Posted by: Gayle | May 15, 2012 at 10:43 AM
That brave little boy, who has been approaching the presidential candidates and has been talked over (imo) with politic speak, seems to be a perfect voice for these concerns. Clearly it's very possible the little we have could quickly disappear . Money will be spent to continue the cover-up , the cause will be denied until this generation passes . I am saddened that all of the love those as yourself, and we as moms feel, is not going to bring about change unless we can literally fight for the truth behind the epidemic then demand retribution , MONEY, to provide for these children who through criminality had their futures taken from them. For now, I FEAR, as I listen to this political fight, that the class division that is possibly going to soon be in place, will leave us begging for help from smaller , poorer organizations than government, the move it seems could be to throw our kids to benevolent organizations, churches ,clubs. Maybe we need to CLEARLY make this an issue , demand the answers that little boy is so eloquently asking for.
Posted by: barbaraj | May 15, 2012 at 10:22 AM
"However, why isn’t anyone asking the big question, WHY?!
"Why is autism on the rise? What are the common symptoms among kids with autism? What do they mirror? What are the possible connections? Why is there more emphasis on trying to disprove a cause than find a cause? Why is there this increasing need for services for a disorder that keeps growing?
"If autism was food poisoning, people would DEMAND to know!"
Natalie, you're asking the questions no one wants answered. They're afraid of the answers. WHAT IF?... What if our country will have to support and care for a disabled generation of children that never have been around before? What it's a disaster of our own making due to an unchecked, unsafe, out-of-control vaccination schedule? That's why the media and mainstream medicine feeds us the lies everyday. That's why it's all "better diagnosing." That's why "studies show no link"-- always. And that's why autism is never a crisis and no one is really worried. Lots of important people have been diligently covering up the truth about autism for years. But that's going to be stopping. Your brother Anthony is in the first wave of the autism tsunami hitting our beaches and we're starting to take notice. There's nothing for them after they age out of high school---NOTHING. We are totally unprepared for this nightmare. IF ALL THE AUTISM WERE MERELY BECAUSE THE DEFINITION WAS BROADENED AND DOCTORS WERE SUDDENLY SMART ENOUGH TO DIAGNOSE IT RIGHT, THERE'D BE NO PROBLEM. It's that simple. Young autistic adults would go where autistic adults have always gone--only no one can show us where they are.
Once we expose the truth that autism is a real, honest-to-God epidemic, all the lies will crumble. We'll honestly address what's happening to our children. We have no choice. Our future is at stake.
Anne Dachel, Media
Posted by: Anne Dachel | May 15, 2012 at 09:21 AM
The aging out of a generation of children is PROOF OF THE AUTISM DISASTER. How long can we keep up denying it?
after 9-11, we'd said that the Towers fell down on their own.
They were poorly constructed to begin with. The planes hitting the Towers had nothing to do with what happened. They couldn't possibly have done that kind of damage. It was just a coincidence. (I know a lot of you people saw the planes hit the buildings, but you didn't understand what you were looking at.) So remember, things like this have always been happening. We only need to clean up the mess and bury the dead.
Posted by: Anne Dachel | May 15, 2012 at 09:19 AM
Unbelievably sophisticated writing and maturity, Natalie.
Would that more adults listen to your perspective. I can relate to your comment to having your life trivialized. All of us are suffering, and our suffering is ignored or barely acknowledged.
Posted by: La Playa | May 15, 2012 at 07:18 AM
God bless you and your family Natalie . We are fighting hard for justice for all the children like Anthony . We aren't fighting in ones or two's anymore , whole families have been mobilised in the struggle .
Our knowledge & our education has surpassed our opponents expectations , so it cannot be long now before the house of vaccines comes tumbling down .
Posted by: Fiona Godless | May 15, 2012 at 07:16 AM