The Truth About Autism, Vocational Skills and the Road to Independence

The truth about autism, vocational skills and the road to independence, is school isn't enough. People, including teachers will underestimate your child, which means your child may not be given a chance to reach their potential if you can't prove what they are capable of. Our kids could be in school all day and never learn what they need to individually achieve their greatest level of independence.  Its all about show and tell, the skills have to start at home, and they have to start early. We have to show and tell everyone what he/she can do and then prove it. 

We began with vacuuming when he was 10. 

People tell me all the time "I wish my kids would do as much as Nick".  He's quite impressive for a teen boy - any teen for that matter - when it comes to chores. I am so proud of how helpful Nick is now, but when we introduced chores when he was 10, I wasn't thinking about how great it would be to have help around the house.  My only thought was working and doing is his only road to independence and tiny steps toward teaching vocational skills.  It's been slow and we have been relentless fashion, but it will have been worth it if it increases his independence much less and God willing results in a job! But, enough with talking about it these pictures tell the story :). 

Then we added after you eat, clear the table, and then feed the dogs. Then clean up after the dogs....Then taking out the trash and empty the recycle bin and the pattern continued from when he was ten until today.  Here's what it looks like now..

• Feed the dogs 

• Give the dogs water

• Clean up after the dogs in the yard

• Put clean silverware away

• Take the trashcans out on trash pick up day

• Organize cloths for the week

• Empty Dishwasher

• Gather his dirty laundry

• Sort mom's filing alphabetically (new I'm tapping into this love for letters)

• Shed papers
• Take out trash and recycle

Then we read "Little Red Hen"
& motivated his to learn how to cook 
the treats he wanted to eat! 

Then  taking him to the Grocery Store and 
having him get me what I needed. 

And Cleaning up after the dogs 

 Now he's working in the School Garden 

 AND HE'S WORKING IN THE SCHOOL CAFETERIA!!

AND YES, WE ARE ALL EXHAUSTED!!!  BUT IT'S BEEN WORTH IT BECAUSE...

NOW NICK HAS A ROUTINE HE EXECUTES EVERYDAY!!! 

Teens With Autism Exit High School As Social/Functional Illiterates

Nick Working in HS Cafeteria

"The first battle was getting the school to buy into the reality that no matter how much time Nick spent in a Special Day Class, no matter well he was doing and no matter what he learned, if he could not translate that knowledge directly into a vocation or show how it improved his independence, it was USELESS"   

I don't know about any of you, but Nick was on track to age out of school no closer to being able to live independently than he was when he began!  I'm not saying he didn't learn anything, Nick is a smart kid; he can read, he can write, he can speak better, he can add and these are all essential tools and yes, much he learned in school.  At the same time, he can't access his community to use these skills, when he can't walk across the street on his own, work with money, use public transportation and he doesn't know what a stranger is, has no sense of danger, and can't monitor time for himself for any other purpose than to keep track of what he is going to get and when.  So, in reality as far as being independent Nick is my version  of a social/functional illiterate. It's sad but true, because for all the great things he has learned if he isn't able to or taught to apply them to a job, or success in the community, what has he really accomplished?.  This isn't just Nick I'm hearing this from parents everyday, so it's not just a Nick issue.   Despite my tremendous disappointment the truth is the system is what it is, IMPERFECT and overwhelmed, and unprepared to individually educate our children.  So we are in a place where we get out of it what we put into it.  When Nick was first diagnosed people told me Autism was a survival of the fittest disease, and that is still true today, so I blame no one.  I take that back, if blame were to be passed out, I would pass it me, Nick's mom because I know better.  

When I started this journey I thought the challenge was early intervention, because no one knew about autism.  I was wrong, now everyone has heard about it and it's still every man for themselves, one kid, one program, one outcome at a time all measured by how much we each can put into the process.  Sad but true, the buck always come back to parents and caregivers. 

Here's what we are doing to improve Nick's outcome after HS. 
I'm sure many of you can give me more input on how you're making progress.

We have been working on vocational skills in various forms for Nick since he was 10, in hopes of improving his level of independence.  Like I said, I thought the system would move with us and support Nick, especially once he entered high school and I was wrong.  Sadly, when our kids get to high school we are tired, and most of us get little exposure to the classroom, we get daily reports that all is well, and relieved to get a break from fighting,  we embrace good news and trust that the system is giving our young adults what they need.  I've learned that is not the case for us.  So many years into this journey I've learned Nick memorized more than he actually learned in class, then over time he would forget what he memorized because the information did not have any real meaning for him.  Nick did not retain a great deal of the useful information exposed to in the classroom because he did not have the opportunity to  "generalize" the information or skills in the real world, so it's more "Drill and Kill" than real learning for Nick.  This wasn't a big worry when he was in elementary school, but it's critical now and there are few options for him to generalize what he has learned in work place settings, given he's not 18 yet.  And when he turns 18 the pickings are still slim in our area.  In LAUSD the ASD classes do not even offer - what is available to other developmentally disabled special education classrooms - Community Based Programs (CBI)!  Sounds crazy, but true.  That said,  there was no way I wanted to see my son age out of school, having sat in a classroom for years, filled with information yet exiting no closer to being able to live independently than when he began!  I promise this would have been the case if I left him in the hands of the well intended, who measured his success based upon his ability to perform the work in the classroom.  

Nick loves Books....him just hanging our reading.

I'm happy to report that we've made progress and I wanted to share the process.   The first battle was getting the school to buy into the reality that no matter how long Nick spent in the SDC, no matter what he learned in the classroom setting, if he could not translate it directly into a vocation or show how it improved his independence, it was USELESS. A big ouch for educators who are well intended.  For example,  if Nick can do math in the workbooks in class, but he can't translate basic addition and subtraction to money, he can't independently  buy things from a bus pass, to groceries or clothing and he can't order and pay in a restaurant, so have to cross out one of the most basic skills required for independence.  
The second battle, was mediation because even once the school bought into the idea, they had no programs and the district rules said they could not create one. Nick was required under the rules of "Common Core" to remain in the classroom, take all the coursework so he could test and pass the standards.  What's funny about this in Nick's case is HE IS NOT ON THE DIPLOMA TRACK AND WON'T BE GETTING A DIPLOMA - BUT THEY STILL SAID HE HAD TO CONTINUE WITH THE COURSEWORK!!!  Fortunately  Federal law provided support, because the point of an IEP is to create the best educational program for each child. That said, the district finally agreed, and the school was given permission to create a real Individualized Education Program for Nick!   

Third, now that he could come out of the classroom, where to put him?  I had been building a relationship with school leadership for years, and had a team open to do the work needed to build a unique program inclusive of gen ed teachers willing to accept and support  Nick.  I know you're all really surprised to learn that all general education teachers are not open to having our kids in their classroom! LOL.   Then we had to build a program where he could spend  his day learning to use  what he's learned in class for the past 14 years in various settings, with a focus on vocational skills.  Here's his schedule now:

Nick Dressed Up To Sing in School
Choir Holiday Program! 

• Homeroom (SDC)

• PE (APE)

• Language Arts (SDC)

• General Ed Ceramics (where he does ceramics which he loves and helps the teacher with jobs)

• Teachers Aid (TA) - For PE Coach 

• General Ed Choir - Where he sings which is building new brain connections and he works on his social skills and functioning in a group.

• Cafeteria Worker - Does various jobs as asked by supervisor 

• Afterschool -  Farm Program 

The Forth Challenge is keeping it going and pushing vocation and independence at home. Our program started with one thing at a time and now when he comes home where he has chores, broken down into Daily (AM, Afterschool, Night time), Weekly and sometimes. 

• Feed the dogs

• Give the dogs water

• Clean up after the dogs in the yard

• Put clean silverware away

• Take the trashcans out on trash pick up day

• Organize cloths for the week

• Empty Dishwasher

• Gather his dirty laundry

• Sort mom's filing alphabetically (new I'm tapping into this love for letters)

• Shed papers 
• Take out trash and recycle

He is learning how to follow instructions to cook. We use mix's so he can read the box (i.e. cookies, mac and cheese). We are starting with his favorites! Even a simple direction followed precisely with measuring is a big deal for us!  This is a place where he gets immediate reinforcement for using math! 


So that's what I have share your ideas.
.

4 Major Companies Are Tackling The Autism Unemployment Epidemic

Learning 4 Major Companies Are Tackling The Autism Unemployment Rate Gave Me a Bit of Hope for Nick's future. 

Thank God we live in a country where private industry can focus on social good, and make an impact in our communities. Thank you Microsoft, Walgreens, Freddie Mac and SAP! 

We have a Walgreens down the street where Nick get's his prescriptions. They are like an extension of our family, always asking how he is doing, giving him compliments. This makes me wonder, maybe Nick can work there one day! 

For adults with Autism Spectrum Disorder, employment prospects are often disappointingly few and far between.According to a 2013 report published in the Journal of the American Academy of Child & Adolescent Psychiatry, the underemployment starts early. Just over 50 percent of young adults with ASD worked for pay outside the home within eight years after they finished high school. And when they did, the work was part-time and low-paying more often than not. Only about 20 percent of young adults with ASD worked full-time at either a current or a most-recent job, and their average pay was just $8.10 an hour.

In total, the combined unemployment and underemployment for young adults with autism is estimated at 90 percent nationwide. People with ASD were said to have a worse “no participation” rate of unemployment than any other disability group tracked in a separate 2012 study from Washington University in St. Louis. Bt it doesn’t have to be this way. As noted in a 2014 report published in the Review Journal of Autism and Developmental Disorders, some people with ASD possess a number of particular traits and attributes that are in-demand among employers, such as excellent visual perception and the ability to remain highly focused in certain situations.

Recognizing this, increasing numbers of businesses large and small are stepping up to not only recruit and employ adults with ASD, but to do so in a way that provides adequate support to ensure their talents and skills are put to use in an effective and sustainable way, benefitting both employer and employee.

There is a long way to go, according to Leslie Long, vice president of adult services at the national ASD advocacy group Autism Speaks, which late last month launchedTheSpectrumCareers.com, a jobs portal aimed at promoting inclusive employment of the autism community. “More progress needs to be made because there’s a whole population of individuals that need competitive employment,” Long told The Huffington Post. “We need to have a continued, sustained discussion on this topic.”

Below are examples of the work several major companies are doing to foster workplaces that are inclusive of people with ASD. Long is hopeful their work will inspire others to take similar steps.

"I still want to see the impact," Long said. "The leadership on this has to be across the board, at all levels for a change to happen."

1. Freddie Mac 

In this July 13, 2008, file photo, Freddie Mac Corporate Office are seen in McLean, Virginia.

McLean, Virginia-based mortgage-finance firm Freddie Mac has been hiring recent college graduates with autism as paid interns through a partnership with the Autistic Self Advocacy Network since 2011. The graduates come from fields including computer science, mathematics or finance. ASAN helps the company train managers who help the interns acclimate to corporate life and also assists with crafting job descriptions for the company.

In a 2014 interview with the Wall Street Journal, Aaron Cohen, the firm’s first full-time hire as a result of the partnership, said, “[I]t’s a good fit for me. I like number crunching; that's always something I've liked doing.” Cohen, a data analyst in the firm’s information-technology department, has Asperger’s syndrome.

Stephanie Roemer, Freddie Mac’s diversity manager, told Reuters in 2013 that the program has been a success.

"Historically, there seemed to be a certain perception of this population as being incapable of performing corporate level work,” Roemer said. “In reality people on the spectrum offer so much to an organization ... willing to think outside of the box and view this cadre of talent as a 'value add.’”

2. Microsoft 

The Visitor's Center at Microsoft Headquarters campus is pictured July 17, 2014 in Redmond, Washington. (Stephen Brashear/Getty Images)

Last month, Microsoft announced it is launching a small pilot program where it will hire people with autism for full-time positions in collaboration with Specialisterne, a Danish firm that assists with job training for people with autism. The program will begin in May with 10 candidates.

“Microsoft is stronger when we expand opportunity and we have a diverse workforce that represents our customers,” Mary Ellen Smith, the Redmond, Washington-based tech giant’s corporate vice president of worldwide operations, wrote in a company blog post on April 3. Smith's 19-year-old son was diagnosed with autism when he was 4 years old. "We believe there is a lot of untapped potential in the marketplace and we are encouraged by the strong level of readiness from the vendors who cater to this segment."

Microsoft previously hosted a hackathon aimed at developing new tech tools that could help families dealing with autism.

3. SAP 

German software company SAP is another major firm that has partnered with Specialisterne to help people with autism find employment opportunities. In 2012,SAP launched the pilot version of its Autism at Work Initiative in India and later expanded it to Ireland. In India, according to Specialisterne, six people with autism have been hired as software testers. SAP offices in the U.S., Canada and Germany are now using the program, too.

According to the San Francisco Gate, the company’s eventual goal is that 1 percent of its global workforce will be people with ASD.

Jose Velasco, the head of SAP’s U.S. autism initiative, told the Gate that the company remains committed to the program’s continued rollout to the Czech Republic, Brazil and elsewhere “because of the business value and innovation promise it delivers.” 

“This is not about social responsibility or philanthropy,” Velasco continued. “SAP values the unique skills and abilities that people with autism bring to the workplace.”

4. Walgreens 

Walgreens, based in the Chicago suburb of Deerfield, is another corporate leader when it comes to this issue. The company employs a high number of individuals with autism and other disabilities at a distribution center in Anderson, South Carolina, which it opened in 2007. The pilot program in Anderson had such strong results -- the facility turned out to be the company’s most productive, and more than 200 other companies have toured it -- that Walgreens expanded the model to other distribution centers.

The program was spearheaded by Randy Lewis, formerly a senior vice president of the company. Lewis’ own son, Austin, has autism.

"People come to me and say, will this work in my environment? Yes, it will. This is not just a good thing to do, the right thing to do. This is better," Lewis told ABC News of the Anderson facility in 2008.

In addition, Walgreens has built a mock store in Evanston, Illinois, as part of a workplace training program for individuals with ASD and other disabilities. It established the program in partnership with the Have Dreams Academy.

Walgreens intends to hire and train more people with autism to work in its stores.

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.

Employment and The Rising Cost of Autism

Another reason to create employment opportunities for individuals with Autism. 

They contribute more, and you contribute less. 

Why Do We Send Teens With Autism To School?

Before you read this I am going to ask a favor, stay calm. You might even want to put your hand under your chin to catch it when it drops, in the event these comments shock you. 

I just heard this "Your son is never going to be independent, so why are you so concerned about him working? He's never going to be able to hold down a job. I mean he can't get seem to get by without one to one support. Are you sure it isn't a waste of time and you're not just pushing to have him learn things he will never really use, and maybe doesn't even care about?. I mean I understand your wanting the best for him, and that's great, but how do you know you're just not wasting both of your time chasing a life he will never live?" 

I was frozen for what seemed like forever, and I fought to push away the tremendous greif I felt hearing her words. I didn't feel angry because I really did hear this persons compassion, albeit misguided and uninformed. 

Finally I said, because he deserves as much opportunity to live his best life as anyone else!!. Then I just starting rambling and it went something like this. From the day our kids are born we start thinking about school. Why do we send our kids to school? To learn, and why do we want them to learn? So they can get a job. And, why do we want them to get a job or have a career? We want them to be able to survive, care for themselves, make friends, take pride in accomplishment and have purpose, both of which society tells us will bring happiness. We want the best for our kids. I want the same for my son and he deserves the same. There are many people who are not living quote "Successful" lives in this world who no one questioned their right to have access to learning all they could, and exposure to opportunities. Nick is a unique person, with skills and talents and he deserves the opportunity to build the most independent life he can. So that's what I am fighting for. And if he is never able to do it alone, so be it. At the same time everything he learns to do, everything that makes him more independent, gives him an opportunity to contribute to society and reduces how much financial support he will need from me and state and federal resources. 

In a nutshell, Nick being given the opportunity to be his best is the right thing to do on a human level, and it's the right thing to do on a financial level. 

Nick’s Working!!!!!!! WooHoo and Thanks LAUSD for working this out.

Nick’s Working!!!!!!!  Sitting in class, reading and working the common core wasn't getting Nick closer to independence. No matter how much he learns seems to me if he can't apply it toward a job or independence, well it's not worth much.  

Been trying for sometime to create a program that would give Nick the opportunity to apply what he has learned and finally we've done it. WooHoo and thanks LAUSD :) 

Riddle me this? Where do we all send our kids where Common Sense is Not Common????

Riddle me this? Where do we all have to go, where Common Sense Not Common???? School! Beware the "Drill and Kill" it starts in 1st grade and continues to follow as a preferred educational method through high-school, which makes no sense! Let's be real, if my child has not learned the calendar by High School, continuing to do "Circle time and drilling months and days of the week" is not going to cut it! Clearly he doesn't care, or get the relevence. 

Until recently I thought that was the epitome of "No Common Sense", it couldn’t' get any worse. And then BAM...surprise more crazy crazy! My son who is not on the diploma track, has to sit in the classroom and do worksheets for English, math and history because it's common core! Common Core for WHO!!!  Nick is not on the diploma track  and he doesn't need to know the history of America or recite the Presidents. What he needs is life and vocational skills. He needs to be able to walk from point A to point B safely. He needs to be able to ask questions and follow directions relevant to doing a job. He needs to use the math and reading skills he has already learned to do a job. He needs to be given an IEP that lets him take what he has learned from Kinder to 9th grade and apply them. He needs to generalize what he has learned to the real world, so when he leaves school he has learned something that will help him exist in society! He needs and deserves an education that helps him to be independent, and memorizing information that means nothing will not get him there. 

However LAUSD seemingly disagrees with federal law, that states a student’s IEP is king. So, here I go again folks another battle. Wish me luck! 

Sincerely,

Angry Mom! 

Residential Summer Camp for Adults 18-26 with Developmental Disabilities!! Wow

I had to share this! There are not enough of these camps for our bigger kids. Camps and groups who offer quality programs are critical and need our support. It's not free, but there are organizations who offer grants for summer camp. My kiddo is not old enough to go yet. If anyone has gone and has feedback, or has any ideas on where to get grants, or more programs. PLEASE POST. 

CAN Camp 2015 Residential Summer Camp for Adults 18-26 with Developmental Disabilities $1150 includes room, board and activities  Campers stay in the dorms at California State University of Long Beach while enjoying activities in Long Beach.  The focus of the camp is to experience independent living while practicing life and social skills in a supportive environment.       For more information on CAN Camp please contact us by email at cancamp@autismla.org  or by phone (562) 804-5556 Space is limited so get your application in early! CAN Camp Application CAN Camp Informational Flyer CAN Camp One Page Flyer Testimony from campers Chris said, "This was the best week of my life, I did not want to leave" Kevin said, "Can Camp was the best time of my life!" (Now one of his favorite thing to do is paddle boarding) Felix said, "It was amazing, I have not been able to do many of these things before with my    friends, I want to get a job so that I can live on my own" Betty Pearson,John's Mom said"do you want to come back again next year and he said Yes! (John says yes to just about everything) his mother then asked "can I come too?" And John said No!!! His mother was stunned because he very rarely says no... Betty Pearson, John's mom - I kept on hanging around camp when finally Terri said John is going to be fine. I left went to my car and cried, not out of sadness but out of happiness. Foir the first time I got a glimmer of hope that John can live an independent life.     Henry said, while jumping thru the waves at Bolsa Chica Beach," this is great! Also stating, Can we do this again? On his last day he asked can I go to Can Camp next summer?" Marcus said, (a man of very few words) to Terri one of the Camp Directors, "I love you, I'm happy!"  Ivan said, "I loved doing everything, but my favorite things were learning to boogie board and sitting around the campfire at Bolsa Chica Beach with my friends" STAY IN TOUCH           Autism Society of Los Angeles  8939 S. Sepulveda Blvd, Suit 110-788 Los Angeles, CA 90045 (562) 804-5556