Symposium on Employment for ASD Adults
In yesterday’s Seattle Post-Intelligencer, journalist Paul Nyhan writes about parents as the “invisible casualties” when a child has autism. 4-year-old Sharky Munat’s mother, Lillie Addams, recalls when the police showed up because Sharky’s screams permeated the thin walls of their apartment. After her son was diagnosed with autism, Addams went through “depression, chest-seizing anxiety attacks, insomnia and incessant guilt that she wasn’t doing enough.” She says:
“It’s this overwhelming sense of powerlessness….I feel blamed by society, by insurance companies. As if it was somehow our fault.”
Sharky is fortunate to have three parents. He lives with Addams and her partner, Stormy Addams; Sharky’s father, Ted Munat, has joint custody (and he has started a blog about Sharky, Still Life with Shark).
Parenting has its challenges, period; parenting a special needs child can get more “interesting” and can often be isolating. It’s not so easy to get a babysitter or to set up a playdate, or just to go out. The internet has helped a lot, via blogs (and here are some on autism highlighted by Daily Kos) and email, which can be answered whenever one has a fast, rare, free moment, though these aren’t the same as sitting across from someone and having an actual conversation over actual coffee.
Truly, other parents of autistic children of all ages and autistic adults have made the long road we’ve been on with Charlie not only feel less lonely, but less scary. Back in January, I was fortunate to be asked to attend a listening tour Senator Robert Menendez’s staff. There I met a wonderful group of parents, most of whose children are older than Charlie—are adults—and found myself learning about “all that stuff” that I was pretty much (1) afraid to ask about and (2) anxiously aware that I needed to know more about: Housing and employment.
I saw most of those parents again today, other parents of autistic adults, policy makers, heads of various New Jersey state agencies and organizations for the developmentally disabled, directors of government and private sector agencies who do job training and help with job-finding, the director of New Jersey’s main autism organization, COSAC—-I was at a special symposium about employment for adults with autism spectrum disorders, sponsored by COSAC and the John J. Heldrich Center for Workforce Development at Rutgers University in New Brunswick.
Representatives from the Human Resources Departments of Sovereign Bank and Meridian Health Services spoke about employing disabled adults (or plans to do so), as did a representative from WaWa, Inc., and from the New Jersey Chamber of Commerce. There was a talk about a program in Montgomery County, Maryland, that is taking the lead on “customized employment” and from the director of Jewish Vocational Service of Metro West; by the coordinator of adult services at one of New Jersey’s private autism schools, and by a representative of the NJ State Employment and Training Commission. Bigger companies have tended to have more jobs for autistic adults (and the vast majority of companies in New Jersey are small businesses.
And there’s a constant need for more individuals to work with autistic adults as job coaches and in other supporting roles.
Here are some websites about employment that were mentioned:
- Learn.Do.Earn
- Accessible Employment
- NJ Next Stop (a general careers website for NJ)
One theme that kept being sounded is that, when looking for a job for an autistic adult, a question to ask a potential employer is
“what do you need?”
It was stressed that punctuality—getting to work on time, attitude, hygience and appearance, and good work habits are valued abilities in a worker. There was talk of “job-carving” and of how, if an individual has problem behaviors, it’s best to disclose those and prepare. Another mother mentioned the importance of starting to think about job training when autistic children are as young as 12—-my son will be 11 in just over a week and there are pre-vocational skills included in his IEP. I echoed the other mother, while noting that, for a parent of a still younger child, the very word “employment” evokes fear and confusion into the hearts of parents—-though, for me, these are lessened precisely by talking to parents whose children are adults and are working, and to hearing about options, needs, challenges, and the struggle to find solutions.
A lot to take in and—after I had had my turn at the microphone—I hurried off so as to be home to meet Charlie’s schoolbus. It won’t come forever and that’s a day we need to start preparing Charlie, and ourselves, for, now—-and it’s good to know, we’re not alone. And good thing, because there’s a lot of work to do to make sure Charlie and kids like him can work.
COSAC’s annual May conference (May 15-17) is focused this year on issues concerning adults with ASDs. On June 6th, there will be an Autism Summit on the needs of children, teenagers, and adults with autism at Bergen County Community College. And, this summer, NJ’s Caldwell College will be offering a course specifically on adults with autism.
Also, COSAC’s document Meeting the Needs of Adults with Autism: A Blueprint for the Future describes the need for a more “coordinated and enhanced system of services and supports” for autistic adults. And you can go here to download a copy of a guide for employers of autistic individuals, Supported Employment & Supported Volunteerism Training Manual from the Alpine Learning Group.
Tags: adults, asd, asperger, autism, autism blog, disabilities blog, employment, Family, family blog, jobs, New Jersey, Parenting, pdd-nos, rutgers, walgreensRelated Stories
POSTED IN: Adulthood, Living Arrangements, New Jersey, Parenting, Politics, Schoolbus, Weblogs, Work
19 opinions for Symposium on Employment for ASD Adults
laurentius-rex
May 6, 2008 at 11:36 am
Well judging by most job advertisements, Charlie will have to become a good communicator and a team player, cos that is all it seems to require to get a job these days, never mind whether you can actually lay bricks, drive a bus, program a computer, or whatever it is the job is actually about.
One of my biggest gripes with vocational programs is that they fail on the social model of disability in that they are too much about trying to change the individual (and thereby rejecting any that cannot change enough) and not enough about influencing and enhancing the workplace environment, which includes employers attitudes and policies above all.
Kristina Chew, PhD
May 6, 2008 at 12:09 pm
I got the sense from (for instance) the speaker from Maryland that she’s had the most success when she has been able to get employers to change and adapt to disabled workers, rather than a potential employee having to fit her or himself into a particular sort of job and job description.
Am thinking Charlie might most like doing something active and outside.
passionlessDrone
May 6, 2008 at 12:16 pm
Hi Laurentius-rex -
“One of my biggest gripes with vocational programs is that they fail on the social model of disability in that they are too much about trying to change the individual (and thereby rejecting any that cannot change enough) and not enough about influencing and enhancing the workplace environment, which includes employers attitudes and policies above all.”
This isn’t a gripe about vocational programs, but rather, about the entire world; and it representative of the biggest failure in some autism advocacy efforts, the notion that the world should change to meet the needs of the individual. This is not going to happen.
Businesses, for the most part are run by people who are trying to make money. Make too little money, and your business goes out of business; this workplace environment trumps all others. Having a workforce of people that cannot communicate well, or work well with others, is a blueprint for not making enough money to stay in business.
The idea that being a good communicator is necessary for nearly all jobs didn’t come from nowhere, or some bias, but rather, from observations that people who communicate poorly, or cannot work as part of a team, have the capacity to cause more unforseen problems than people who do not, regardless of the style of work they are engaged in.
The world isn’t going to change for people who are poor communicators or team players no matter how much we’d might like it to.
- pD
laurentius-rex
May 6, 2008 at 12:26 pm
Oh but it will, at least I will die trying, do you think the world has not changed over the last 30 to 40 years of disability campaigning, buses that can take wheelchairs, information available in alternative formats, none of which would have happened if untrammeled capitalism was not regulated.
The world changed from what it was to what it is, and in the changed shifted emphasis as to what was valued in employment, it can shift again.
Businesses that do not care about there employees ability to do the job more than how they get along with the boss are not going to be good businesses because they will fail to recruit the right people.
So put away that crypto fascist social darwinian position that some people are made to be trampled on, lest the worm turns and tramples on you.
xtiluv
May 6, 2008 at 1:01 pm
…less lonely and less scary…so true and so necessary. I don’t know what I would have done had it not been for the information and support provided by those who have traveled this road before us. Lifesaving…
As for the discussion about changing the world vs. changing the autism, I think that both things are equally important and possible. My sis and I discuss this all the time.
We have to change the world a bit by increasing the understanding of the strengths and deficits of autism (which I truly believe is happening currently), but we also have to give autistics the tools to mitigate some things that cannot be changed.
Kai is young now (almost 5), but I am not ashamed of his autism and I will teach him the to feel the same way, if I can. Hopefully, this will help him be up front about any special issues that he may have the need to address in the workplace. I truly believe that many employers will be willing and able to make accommodations necessary for his success. Most people will be more accepting of differences in behavior when they understand the root causes. I experience this most of the time when I explain why Kai’s behavior is not typical of his peers. I have yet to experience a situation where others shun us because of our “diffabilities”.
I also realize that Kai will have to make adjustments, too. It is unrealistic to expect that the world will make all of the changes, all of the time. I cannot remove all obstacles from his path, but hopefully I can teach him to see them as challenges and opportunities for creative solutions. There are so many different types of careers available today, and many that he will consider that do not even exist yet. Look how many people make their living off the internet, often with minimal social contact. This opportunity did not exist 20 years ago.
Communication skills are important, but perhaps what is most necessary is that we communicate better about autism itself.
passionlessDrone
May 6, 2008 at 1:30 pm
Hi Laureintis Rex -
“Oh but it will, at least I will die trying, do you think the world has not changed over the last 30 to 40 years of disability campaigning, buses that can take wheelchairs, information available in alternative formats, none of which would have happened if untrammeled capitalism was not regulated.”
Forcing people to hire people that are not good communicators or team players is very different than getting elevators placed into buildings or wheelchair lifts on buses.
“Businesses that do not care about there employees ability to do the job more than how they get along with the boss are not going to be good businesses because they will fail to recruit the right people.”
Doesn’t this describe exactly how businesses are being run right now? Do you think they are all on the verge of collapse because they lack enough ASD employees? The vast majority of jobs require good communication and team working skills; it is not an afterthought. In all honesty, do you think the idea of placing a high value on these skills is not based on observing what happens when those skills are not present?
“So put away that crypto fascist social darwinian position that some people are made to be trampled on, lest the worm turns and tramples on you.”
Try a speel like that in your next interview, or meeting with colleagues, and see where it gets you; precisely where you are now, on the outside complaining that everyone should change because it works better for you.
I can hardly believe you’ve been banned from someplace. How amazing.
- pD
Emily
May 6, 2008 at 3:35 pm
The world continually adjusts as people realize that the boxes they built around people or types are not structurally sound. Society used to think that people with autism had nothing going on upstairs. That people who were gay needed to stay in a closet. That people of different “races” should not marry. That life in a wheelchair simply should be accepted as having no life at all. That an inability to drive should be accepted as a sentence to being permanently homebound. That women didn’t have what it took to succeed in the workplace.
I’m thinking some of these attitudes have changed (gee, ya think?), and they’ve done so in part because businesses were essentially forced to deal with it or die. Without laws or powerful fiscal incentives necessitating it, there would, for example, probably be hardly any women at all in science today. Yet, women have much to contribute even if they differ from men in how they do, view, and manage things. We found this out against our will in WWII, and these are important lessons to learn, socially and economically.
If women hadn’t “complained” and demanded (and continue to demand) that the world “should change” because it works better for them…guess where women would be. Presumably at home, barefoot and pregnant. Demanding accomodation because you’re not the ones in charge doesn’t make you a whiny brat. In biology terms, we call them the “pioneers.” Thank God the women who preceded me didn’t have the attitude that they should simply lie down and take it or accept lower salaries or continue peering through the glass ceiling or continue trying to be superwomen and instead altered the way of the workplace to make it a better fit for them and them a better fit for it. This process is a two-way street, not one of simply “demand demand demand” from one side only. Businesses don’t *have* to find a place for autistic adults, but savvy businesses that have appropriate places will see the potential there and use it, and autistic adults will make it known that the potential is there to use.
People with disabilities have ways to contribute to society that actually involve making money for businesses, and smart businesses see that. It’s a sign of any good businessperson or manager to identify the strongest abilities of any human being and then put that human being to task using those abilities. This kind of approach is efficient and successful, and pleasantly enough results in greater inclusion all around.
Being a team player or a “good communicator” is simply not necessary for plenty of jobs out there. There is a reason some MDs become pathologists and radiologists, and it’s not because of their team player or communication skills. Anyone who’s ever spent time around games programmers knows that neither of these attributes is a requirement for success.
LR, I like your spiel. I’d hire you (if I were hiring). Not as a PR flack, certainly, but obviously you’ve got your talents.
Kristina Chew, PhD
May 6, 2008 at 4:24 pm
There is a history professor where I work who has been in a wheelchair all his life. He teaches almost in a lying down position. He is older now and may retire soon, and ended up in the hospital in the spring.
He’s back on the fall schedule.
Regan
May 6, 2008 at 4:30 pm
“I got the sense from (for instance) the speaker from Maryland that she’s had the most success when she has been able to get employers to change and adapt to disabled workers, rather than a potential employee having to fit her or himself into a particular sort of job and job description.”
Give a little, get a little.
Try to change the person too much, any person, and you run into behavior management.
Change the setting and sometimes that’s a positive change for everyone–that’s contingency management.
It’s not a bad thing to examine from time to time, “does it have to be this way?”. I believe that’s known as innovation.
Emily
May 6, 2008 at 8:37 pm
My 90-year-old grandmother has been wheelchair-bound with MS since the 1960s. In the interim, she ran her own school for about 20 years before retiring and burned through a couple of husbands while she was at it. She’s like the energizer bunny, and that wheelchair never stops her, even with things that might stop people standing on two feet.
Kristina Chew, PhD
May 6, 2008 at 9:02 pm
A couple of people mentioned working at “off hours”—for instance, doing custodial work at an office building in the evening, or at a movie theater during the day.
Also point that was made was about job coaches. Charlie is very used to having 1:1 support but he’ll have to learn to work with one supervisor, him, and other workers.
My grandmother was still sewing clothes for stores when she was in her 90s!
Emily
May 7, 2008 at 9:47 am
Kristina (this is way off topic), my OTHER grandmother (who is 88) worked for decades as a seamstress for a very large foster home in my hometown. She is so good with that kind of work, and I always like to think about how many children and teens whose esteem she helped simply by providing them with good, fashionable clothes to wear. She’d take donated items and spruce them up and update them, or sew them something new. Sewing, sewing, all day long.
Ted Munat
May 7, 2008 at 8:35 pm
This is Sharky’s dad from the aforementioned article in the Seattle PI. It is a funny coincidence that our article was referenced just before talk of supported employment, as my career is as a job developer/job coach for adults with disabilities.
I’m happy to hear you and others are thinking about employment so many years in advance. From my perspective as the person who could one day be trying to find your children a job, please allow me to pass along some advice:
1) Start talking to everyone you know about your ideas of future employment for your child. Plant that seed in all their minds, because for many people it never occurs to them a a person with a disability would have a job unless you tell them. This gets everyone in the child’s life visualizing the child in that light. This leads to some good suggestions from others. Also, the communal belief in the child’s future employment prospects rub off on the child, who then in turn believes it as well. Employment as an adult becomes an assumption and a healthy expectation.
2) Start thinking of your friends, families, coworkers and anyone else you know in terms of opportunities for networking and connections.
The fact is that it is rare for an agency providing supported employment services to have an established network of businesses that they can simply place a call to and wrangle up a job. Only the largest employers are able to create several supported employment positions (and the prestige and good compensation these employers make the competition for such jobs high). So when I establish a relationship with an employer and create a job for someone, I usually cannot go back to that well over and over again. Each time we must move on and create a new relationship.
Most of our jobs, and almost all of the good ones, come from connections the family had. And this does not have to mean that Uncle Bill gives the person a job at his accounting office. It might mean that Uncle Bill has a friend who works in a law office, and one of the partners at the law office has a golfing partner who manages a software company, and the software manager has a nephew with autism. If parents can start a job developer on that path, the developer can then navigate that path to find the right person and negotiate a job.
3)If the child expresses vocational interests, probe into the root reasons for those interests, and see if that can lead to a widening of the interests. For example, I might talk to someone who has never worked, ask him what kind of job he wants, and he’ll tell me he wants to work at Best Buy. If I ask what about Best Buy appeals to him, he might tell me that he likes electronics and computers. If I ask what he likes about computers, he might tell me he likes gaming. From that, I can then arrange for him to have some job tours of software companies that are focused on gaming, and things of that nature. Maybe this appeals to him. Now we’ve got the Best Buy option, and we’ve got the software company option. If this process is already in motion when someone like me shows up, it gives you a head start and shortens the amount of time the job developer devotes to discovery.
4) Start dreaming. One of the questions I always ask when in the discovery process with an individual and his or her family, is what type of work has the family always dreamed of the person having (and this is a standard question from a widely used Customized Employment Profile created by Marc Gold and Associates). I am often disappointed when the family answers something like “recycling,” or “grocery store.” Come on now, no one dreams their child will one day be a courtesy clerk! The career aspirations of a person with a disability need to be grounded in reality, just as they do for all of us, but there is no reason to fear having high hopes and dreams. Believe me, having a child with autism I know all about the fears associated with ever getting your hopes up, but it is very important to never sell our children short, in general and specifically as far as what they can and cannot do for work.
Kristina Chew, PhD
May 7, 2008 at 10:02 pm
@Ted Munat,
Thank you for much for this. I will keep all of it in mind as we move onward teaching Charlie. In particular, I very much like your phrase about how the “communal belief in the child’s future employment prospects rub[s] off on the child.” That means a lot, and your noting of dreaming—-I would really like Charlie to do something active and that doesn’t involve sitting at a desk, as he seems to thrive on being outdoors and active. (I am very unsure about him working as a courtesy clerk or at a store—-he needs more space and fresh air.)
And thanks for sharing about Sharky online. Very best—
Bonnie Sayers
May 7, 2008 at 10:57 pm
Thanks Ted for sharing your tips. My HFA son is 13 and wants to work at a Zoo or animal sanctuary. We have been to many CA websites for sanctuaries and the Zoo here in Los Angeles. They have a high school magnet there that he wants to go to and we will apply in a few years and go there next year to give them a heads up on him.
When he turns 16 he can volunteer at the Humane Society and also the Zoo. We will be working on his resue to help him secure a job.
My other son turns 12 next month and is nonverbal and not sure what direction to go with him yet.
Emily
May 8, 2008 at 12:03 am
Ted, thanks for that useful post. I plan to share this information with many parents I know.
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