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Duquesne U. Special Education Professor Ann Huang Creates Mentor Program for Autism Employment

Paycheck Great story and no April Fool's joke.

By Mark Roth of the Pittsburgh Post Gazette


A young man was cleaning an elevator at a local hotel recently when some guests entered the car.

"Say hi," said a young woman standing near the man. She wasn't being rude; she was just doing her job. The woman was a Duquesne University student who was assigned to mentor the young man, who had a high-functioning form of autism and was working at his first full-time employment.

Encounters like this one are a key part of the program devised by Duquesne special education professor Ann X. Huang to help people with autism succeed in the workplace.

Young men with Asperger syndrome or other forms of high-functioning autism, a neurobiological disorder that affects communication skills, can often learn the skills of a job fairly easily. What they struggle with is how to behave with people.

Dr. Huang's solution? Pair them with mentors who will stay with them throughout the work shift and coach them on how to interact with bosses, co-workers and customers.

After getting a pilot grant two years ago from the state Department of Public Welfare, Dr. Huang has now received a $25,000 grant from the advocacy group Autism Speaks to extend the program to Wesley Spectrum Services, a local agency that works with the families of developmentally disabled children.

Although the program's scope is modest -- it will be able to help only a few children to start with -- it is tackling one of the most critical and overlooked problems in the world of autism.

As children on the autism spectrum enter their teens, even those who can finish college often have extreme difficulty finding work. The unemployment rate for people with autism is estimated at 80 percent in America, and of the 20 percent who work, most are in part-time jobs, says Peter Bell, executive vice president of programs and services at Autism Speaks.

The challenge is so great that a new group called Advancing Futures for Adults with Autism was begun last year. At its national town hall meeting in November, Mr. Bell, speaking of his own teenage son, posed the questions that worry many families of young adults with autism.

"What happens when the school bus stops coming to our house? Where will he live? Will he have a job? Who will take care of him when we are not around? These questions weigh heavily on us."

Dr. Huang said the answers to those questions do not necessarily lie with teaching such children how to perform a job, but how to treat others while they're on the job.

"Some of them do not greet people mutually. People will say hi, but they will respond with no eye contact, or they might not respond at all," she said.

"On other occasions, they might be too nice to other people -- they don't realize they should keep a certain distance. Some of them are very sensitive to sensory stimuli, so if they like the smell of someone else's shampoo they might come too close to the other person and that might offend some people or scare them."

One good way to meet those challenges, she said, is to pair the autistic workers, most of them young men, with college-age peers who understand all those unwritten rules of social engagement.

In her pilot programs, Dr. Huang has tended to use young women as mentors, because the autistic men respond better to them. But for certain situations, such as when the men are in a public setting, she prefers male mentors.

One example: on a public bus trip, an autistic man was very attracted to a young woman who had boarded the bus. "We say to these young men, 'If you see a woman, you should keep a certain distance from her and you should not stare at her all the time.' A lot of autistic people have good memories so they can remember those rules, but it is sometimes hard for them to generalize the behavior."

In this case, she said, the young man told his mentor that even though he knew the rules, he still wanted to sit near the young woman, but his male mentor physically pulled him back.

Dr. Huang's pilot program worked with the St. Anthony School Programs, a Catholic system for children with Down syndrome, autism and other disabilities. She is now trying to extend the mentoring system to Wesley Spectrum Services, which works with more than 7,000 children across Western Pennsylvania.

So far, the autistic students have worked at Duquesne's cafeteria, law school and copying center, as well as at the Pittsburgh Marriott City Center housekeeping program and a few other work sites.

Finding willing employers is crucial, she said, but even when she can do that, there is sometimes still the issue of insensitive co-workers.

She went to observe one of her students at a local grocery store recently, where he was bagging at a checkout counter. The boy has Down syndrome and autism, she said, so he is both friendly and tends to repeat himself.

"He was saying, 'It's fun outside, do you like it?' He has good verbal communication and he was trying to greet people, but the problem is he repeats things again and again and again." It clearly irritated the cashier, said Dr. Huang, who did not let on that she knew the young man.

"The cashier was not very happy about the way he was acting. I had bought some eggs, and she asked if I wanted her to put my eggs in a bag, because 'I don't want him to ruin your eggs.' I said 'No, no, no, he's doing fine.'

"He was doing his job very well. The only part that embarrassed the cashier was that he was very friendly and didn't know the boundaries."

Dr. Huang never expected to end up doing this kind of work. When she was 24, she was a successful young English teacher at an elite school in Beijing for the children of wealthy parents. Then, she happened to visit a school for developmentally disabled children, and her life changed.

"The school I was teaching in was so different from this one, and it totally changed my mind. In Chinese society, we always think out of sight, out of mind. But I decided we cannot ignore them."

She applied for a graduate program at Tennessee Tech University, where her mentor specialized in autism, and joined the Duquesne faculty after getting her Ph.D.

Her only frustration has been that her funds for the mentoring program have been so limited. "If other agencies would like to replicate this program or other school districts were interested in developing such a program, I'd be more than happy to help them develop it.

"I hate to refuse parents. They ask, 'How can we get our kids into your program?' and too often, I have to say 'I'm so sorry, the money is limited.' "

Mark Roth: mroth@post-gazette.com or 412-263-1130.


Read more: http://www.post-gazette.com/pg/10088/1046417-114.stm#ixzz0jiIfLPOE

Comments

Benedetta

Robin - you are bad apple - right?
Thank you for the advice, and you are not rambleing, but telling me how it is.

My son says that there are a lot of people out there that just talk to hear themselves.

He resisted going to this place, and you know what I think I will listen to him and you and not go.

Video games? I will have to try harder on this. Maybe give him a list of things he has to do each day before he can play. He has a short fuse - and sweet too! Confusing.

According to this group of doctors this rehab place could teach him to get along 80 percent of the time and learn how to fake the rest. They say they will teach him how to look who he is talking to in the eye (he already does this - to the point that other psychs in the past say that my son does look you in the eye but there is a strangness about how he looks you in the eye.??? well ?

This group of doctors say that Aspergers think they are fine, there is nothing wrong with them, they can not see it. They say that my son thinks that too. They say that my son thinks he is a "hottie" their words!!??? AND they will teach him other wise. What ever that means.

They get no money out of it - as far as I know? But who knows anymore? They are sending us to another place way across the other side of town. But that is all they suggested. I guess when you come to them they think they are suppose to come up with some kind of plan. I just wanted them to help my son get SSI. It is not that I am giving up on my son - I just am so anger I want the government to pay for what they have done. Also I could use the money to buy seizure medicine since our insurance run out on him next year. OR maybe this Obama bill will help in this? BUT I am not holding my breath for the government to come to our aid on this.

I mean look at what a good job the government has already done for us.

Bad Apple


Benedetta,

Have you asked these people who are pressuring you to drive your son an hour and a half away to learn how to engage in small talk just WHY you should be doing this? Why is it something that he must do? Is it for him or for them? If it will make a person happier to be able to engage in small talk, then I am all for teaching them to do this. I've always felt, however, that for me, it was never going to really happen with most people. To try to 'teach' me to do something that for most people comes naturally felt like putting left handed sheers into my right hand. Perhaps if I were on enzymes or whatever, I might feel differently. I will say this – I would like to be able to do this better. But it really angers me that it is something I'm expected to do. And expected to do for the most part by people in whom I see little to respect.

I have always felt that most NTs have an innate distrust for those who don't engage in small talk. And to tell you the truth, in recent years, more and more, it's started to sort of piss me off. I understand that this is how they learn about others- about their likes and dislikes but most importantly their belief systems (ie whether or not they feel the other person is one who can likely be trusted).

But if I don't engage in chit chat and make eye contact, why have NTs almost invariably presumed that this means that either 1) I don't like them or 2) I am a person who can't be trusted? I was brought up to believe that a person should be given the benefit of the doubt about what type of character they have. If you know nothing about me because we've not spent hours engaging in chit chat, why must the 'default setting' for you, as an NT, be one of distrust?

I'm not speaking to you, personally, Benedetta. I just mean NTs in general. Most of them. And I don't know how your son feels about all of this.


It's weird because I tried to bring my youngest son up to believe that it didn't matter that he couldn't make small talk. “I can't, either, I told him,” and “I know that a lot of people think there's something wrong with that and are mean because you're like that, but the older you get, the less of those you will encounter.” I spoke with his teachers when he was in grade school and I told them it would be a good thing if they could try to encourage him to interact with peers, but only if they could do that without making him feel bad about the way he is. It is NOT some horrible defect. I granted them that I had no idea how one would go about doing that. I wonder now if that was the wrong approach. At any rate, I think I was wrong about there being less as time goes by. Less people who are bothered by those of us who don't chit chat. These days I think aspies get more abuse, and by older and older people. People who should know better. But I could be wrong. I don't spend much time in my children's school. I don't know if they're being bullied. They've always said no when I've asked, that is all that I know.

I'm just starting to get really angry at what I see as a group of REALLY nasty people. People who do things like poison others for profit then cover their collective asses as more people get poisoned - who will lie, steal, cheat and just basically use every person they encounter for their own purposes no matter who gets hurt. But who don't like me and who don't like your son because we don't chit chat.

You say I'm successful, but I wouldn't jump to that conclusion. I'm not sure what 'success' means. I've got an engineering degree and I did have a Professional Engineering license in the state of Ohio which I've not bothered to renew in recent years. The fact of the matter is that I haven't worked in the field in thirty years. Since I was pregnant with my first child. I know that this is unusual. And I know it doesn't endear people to say what I'm about to say (we mustn't portray ourselves as victims), but I'm going to say this anyway – there've been times, many times actually, that I've felt that all of my education plus a buck and a half would buy me a cup of coffee at the local fast food place. I believe that the people who look into these things would confirm my suspicions and fears about the job prospects of your average aspie, and never mind their academic achievements. I suppose I'm to be grateful to people like Ms. Huang for bothering to notice and to speak of it. For some reason the fact that she's getting paid to do so and by an organization like AS does not give me a warm fuzzy feeling. (Oh yeah, they tried to have me arrested simply for handing out vaccine safety information on a public sidewalk. Funny how that always seems to factor in, how I just can't let that go...)


Anyway I'm sorry about the damage. At this point however, (and now I'm just speaking for myself (this should not be construed to constitute medical advice and yada yada...)), I'm not sure it makes a great deal of sense to rely on pictures that a doctor presents of your son's brain and capabilities. Someone once said to me that normal is just a setting on your clothes drier. As a person moves away from the unable -to -speak -or -be- toilet -trained end of the spectrum, I believe that that is more and more true. As for the gaming, if you think it's affecting him adversely, I would deny him his gaming unless he spends some time doing something more to your liking. I am told we're supposed to avoid negative discipline in favor of positive. But sometimes a parent just has to try to stay sane. It is your house after all. As my children have grown I've always found it difficult to know when I'm asserting too much control, or not enough. My daughter recently asked me what sort of work she'd be able to do. All I am able to tell her, or have the patience to tell her at this point, is “you can do any job you want to, if someone is willing to pay you.” She has spent the last two and a half years going the traditional route that people are expected to take to achieve success- college. She's decided to take some time off and try to just find some work that she enjoys. Personally, for her, I think it's a good decision altho my husband still places a great deal of stock in the value of a college education. I just get very scared when I read statistics such as 'eighty percent remain unemployed'. I don't believe the rate is lower in those who have pursued more advanced degrees. Regardless of their success in the academics.

I'm starting to ramble. I guess the main thing I wanted to say is that I don't understand why it is expected that your son must learn to make small talk. If you ask the doctors who are suggesting this, I'd be curious as to their answer. If your son has expressed an interest in being better able to converse casually, then by all means help him. But myself, I would tend to be skeptical of people who will tell you it can be taught by means such as sitting a child in front of a computer, to read about various social situations.

Benedetta

Bad apple;

You, and Jake Crosby are rare! And believe me - I am so glad to hear that you two are being successful. I am not sure it gives me hope for my son, but I am glad for you - thrilled as a matter of fact! Thank you for telling me you are an engineer.

My son has aspergers (at least I been told that - along with in the past tourettes, PDD/NOS, to sure enough classic autism).

I just received his medical records from the neurologist and I looked through them. There is damage in the front lobe of the left hempisphere (that is the math part, right)? We have struggle through algerbra at college level - had to take it twice but he did succeed???!!! But engineer is not in his future. He has exceptional spacial skills, I wonder what that means?

My son might be able to do much, he has gone to communtiy college for a number of years.

but his "interest" - what he spends ever minute doing in his closed off room is video games. What amazes me is - he can recognize the ones right off that will induce seizures and gets rid of them in the first few minutes almost seconds in playing them. Reminds me of some one that likes snakes, and they are quick to recognize the posinous ones real quick.

Right now he really likes 'God of War'. He can tell you everything there is about Greek and Roman mythology. Can't make a living at that can you?

When Tom Insel implied (at least that is my impression)is autism was NO big deal - NO NEED TO WORRY- they can all become engineers. Now - what percentage of them I wonder? If he made this statement had he looked at any stats, any research to in that direction, or had he just watched the television documentary "Brainman" at someone like Tipman from the UK - one of two in the whole population of the world?

In real life my son was taught to say "hello - how are you doin" - and he does better than most people.

Yet, that is really not enough - I am told - I must drive an hour an half away for a 23 soon to be 24 year old to teach him small talk.

Bad Apple

Benedetta, btw, as it so happens, I am an engineer. I think that Tom Insel might be right about that - that a lot of them could become researchers and engineers.

This doesn't change the fact that some of the people being harmed by vaccines won't ever be able to do something as simple as clean out an elevator.

And I'm sorry Kim but I have to say this - given what I've seen in the last few years it's impossible for me not to hold organizations such as AS just as responsible as the vaccine makers, health officials and main stream media, for the fate of those children.

Bad Apple

I remember my mother once telling me that when she was very small, all of her teachers insisted that she needed to start using her right hand in order to write and eat and etc. Seems that being left handed just wasn't acceptable.

I remember her telling me that it made her about near nuts. I don't know if those were her exact words. Well there is something to be said for being right handed in a right handed world. Ever try picking up a pair of sheers with your left hand? Pretty damn awkward ain't it?

So anyway, my mother did spend some time trying to do this. Change from being left handed to right handed. Eventually she gave it up.

Was round about that time they started making sheers especially for left handed people.

To Benedetta,

I don't believe that it can be learned. This is just my own opinion on the matter and perhaps with other therapy (diet, nutrition, supplement, chelation) it becomes more likely that it can be changed. But I have to say that I still see it rather like trying to make a left handed person behave right handed. Hardly seems worth the effect, seems to me an affront to the left handed, and something that couldn't be more easily fixed by just a little bit of consideration and accomadotion.

Me, I'm willing to try to meet people part way. But only if they're halfway decent people.

Benedetta

Oh dear woke up at 3 this morning and remembered it was Tom Insel head of the IACC that said a lot of them could be researchers and engineers.

Brother to Richard Insel - co-maker of the Hep B vaccine.

Sorry, but now corrected and back to bed to think on other things that really matter.

Benedetta

Kim;
Well first of all Imus from IACC said all our high functioning aspergers could be researchers, and engineers. So I was depending on that.

Sorry a bit of dark humor here. I guess it comes with the territory.

But, really I already took mine to the University while he was in high school and enrolled him is a speech class. The University students were so sweet they worked with him, a couple even took him over to the University grill and meet their friends over there and made sure they evolved him in thier conversations.

Meanwhile at the high school we all worked together to get a group together and took them bowling, rock climbing (very safe) roller skating. The teachers all worked up a sheet of what needed to be worked on in social settings.

All this and still the psych tells me this fall that I can drive one hour and half and get him into work rehabilation and they will do more training for social environment.

Well maybe it can't be learned.

SO, forget the extra help at the elevator use that money instead to send them to engineering school.

Stagmom

I think it's a terrific program. My mother in law says she told my husband and his sibs that if they became ditch diggers, just be the best they could. I have no shame that my daughter(s) might not become white collar professionals. Every parent of an older Aspergian kid I meet (20 and 30 years old) says they can not find and hold a job. Imagine for the lower functioning kids who are growing up how few jobs there will be. Will it be Blues Clues and Sesame Street and Thomas at home from wake up until bedtime when our kids are 22+? I should hope not.

KIM

Colleen

I don't understand why there is negativity at all with this article.

The Neurodiverse group may not approve of this program, but the fact still remains that the reason the unemplyment rate for high functioning autistics is 80% is because a hotel is not going to keep an employee that is cleaning the elevator and does not show a basic courtesy to the hotel's guests.

That's the reality whether anyone agrees with it or not.

The ND community struggles with wanting acceptance and I totally and completely agree with them on that point. But, if someone doesn't know you have autism and you are invading their personal space or acting oddly, then they may feel threatened or scared in some way. After all, if you don't know what autism is but you have run into people who were strangly behaving, you would be leary of them. That leads to complaints to management which leads to the high functioning adult being back to the state of unemployment.

As the mother of a high functioning child, it is good to know that someone recognizes that this is an area which needs to be addressed. Yes it is sad, yes it is painful to read an article like this...but at least someone has stepped up to the plate in trying to make a difference for some of these adults.

I wish them much luck and success with their program.

Bad Apple

Correction: I've been instructed to tell children to be careful of the escalators. I said 'elevators' in my previous post when I meant they were to be careful of the escalators. Cause escalators can eat your shoes.

Benedetta

I mean if he was in a factory earning good wages, with insurance working on an assembly line, or working on one of the machines, or keeping the line going in the factory, and then during lunch some one comes by and helps he going around talking to his co workers - maybe.

So this high functioning autistic that can do the skills --- clean out an elevator?

Benedetta

He was cleaning out an elevator???

Well that took a lot of training.

Meanwhile someone standing there is telling him to say hi???

I do not feel charitable this morning, I am sorry, but this scene in my mind is just to heart breaking.

Bad Apple

From my perspective it seems that the 'neurologically typical' seem to place a great deal of importance on what appear to me to be rather trivial matters.

For instance, “say hi”, the man cleaning the elevator is told by his mentor. It's important that he say hi to people he doesn't know and will likely never see again in his lifetime. They will feel offended if he does not, and yet what real harm has his lack of eye contact caused them? The irony is that it's possible, however unlikely (and it looks to me, here from my perspective, that that possibility grows with each passing day), that they are people whose actions might have in some way resulted in his being as he is.

I am currently volunteering in a public building with escalators. Large numbers of children come thru, and I am instructed to inform them to be careful of the elevators, as well as to walk, only, when they are in the facility. I shouldn't tell them not to run, but rather should tell them to walk, because that sounds more positive, and we always want to sound positive. (flashback – Marian : “We only talk about positive things here on our support forum” Shari Goldberg: “You're spoiling our evening”)

I recall my oldest child, who spent years walking the halls of her middle and high schools in pants that, for some bizarre reason, were always eight inches too long for her. They were designed to be perhaps five or six inches too long for most girls, but on her, they were considerably longer. And she would roll them but they'd roll down again and so then she would walk around with the bottoms of her pants dragging until I would cut them to length with pinking sheers so that she wouldn't break her neck. Such a bad mother I am, that I didn't hem them. But the children are taught sewing, and so I said to myself if she wants them sewn she will do them. I will cut them for her, I will do that much although at one point she didn't want me to and what crazy parent wants to assert too much control over clothing choices of their teenagers? But I just couldn't see her climbing the stairs in them, hanging all about like that. I pictured people stepping on the bottom of her pants (by accident or on purpose) while she was on the stairs, and her tripping and down the stairs she would go. So I would cut them with pinking sheers. But there were usually a few straggler threads.

And now I am told to greet buses of schoolchildren and to give them safety instructions. And part of that instruction is that I should inform them to make sure their laces are tied. “Because escalators can eat shoes,” I am to say, presumably with a big smile. And “stand and face forward when you are on the escalator.”

But here are the thoughts that go thru my head. Number one: but I've seen children with things dragging besides just shoelaces. That could possibly get caught. Am I supposed to take the time to explain to the children that it's not just shoelaces but torn pant cuffs, or trailing straps from book bags being dragged along? How much of a lesson on escalator safety am I to give them, if there truly is some risk? Number two: I don't WANT to tell them about escalator safety. Children have enough to fear, without worrying about an escalator that will eat their shoes. I shouldn't HAVE to tell them about escalator safety. I should be able to assume that an escalator won't eat their shoes, and if I can't assume that, I, at least as a volunteer (and right now I like being a volunteer, rather than an employee), don't want to have to take responsibility for their shoes and their feet as they ride the escalator. Certainly if I do get paid to take this responsibility, I am going to read from a sheet of paper exactly the words that I am to say to these children while they are on their buses and before they get off. They don't need me for that. They need a recording. A friendly, upbeat sounding recording.

My daughter was trained, when she worked at a fast food establishment, that one shouldn't say “hello” when greeting customers. One should always say “hello and welcome to (insert name of fast food establishment)”

Does it really matter that much?

And excuse me for being maybe a bit defensive, but what I see is a certain type of people. And I know it's not always good to categorize and then make assumptions about whole groups of people, but yet it's done all of the time. And these people, they are people who don't understand how to design a safe escalator, but do understand how to make eye contact when they say hi. And they go about their lives and their jobs saying to themselves things like “oh it's important to make eye contact cause that sort of thing makes people feel important and valued”. At least I presume that this is what they think. Don't get me wrong, I don't doubt that eye contact has value. It helps people to determine such things as when one should speak or be silent, I understand, or when the person you are conversing with is finished speaking. And no doubt it helps with maintaining proper distance. But is it all really that important? Is it such a big deal that I great a customer with “hi” rather than with “hi and welcome to ___________”?

So this is what organizations such as AS would now put their money toward.

I remember going to an ASGC meeting some time back. A man was speaking about a program that helped teach adults with aspergers. Parents were there and the man said things like “we help you keep them on their medications.” This seemed a large issue. “We know how difficult it can sometimes be to get your adult children to stay on their meds. We will help you. We will encourage them.” The adult children with autism would be taken on outings and such. But I got the distinct feeling that outings would only figure into the picture if certain conditions were met.

There was, as a part of this program, a series of sessions that adults with aspergers could partake in. It was kind of expensive and the cost wasn't included in the overall fee for joining this man's program but was a separate payment that had to be paid by parents. It involved oh I forget how many but I'm thinking six or eight sessions, where a child sat in front of a computer for a few hours at a stretch and answered questions about various hypothetical social situations.

I remember I had some confusion as to how this man's program was being funded. He at one point said that it was funded with government money, and at another said it wasn't but was funded, rather, with fees charged the parents of these adults with ASDs. I asked him about this – to clarify where the funding came from - but didn't ever really get an answer I could understand. I wish I could remember the name of his program, but I can't. Perhaps I wrote it in my journal.

So, it doesn't matter if the man at the grocery store counter is packing the eggs correctly. He is still going to be treated badly by his coworkers. People who don't seem to have enough logic to understand even a simple thing like the fact that what a person is saying as they're packing has almost no chance of affecting whether or not those eggs will be ruined as they're packed.

I understand, Ms. Huang, that the money is limited. To pay people to walk around with those high on the autism spectrum, and tell them what to say and what not to say, as they get paid to clean the elevators. But here is a question for you. Why must the neurodiverse learn to act in the ways of the NTs? Simply because there are more of you? I would be willing to work with the neurologically typical, in order to help mentor them in the ways of thinking and acting like someone with mild ASD. I'd better be getting paid better than I would be if I were cleaning that elevator. I certainly won't volunteer.

And I won't do it either if I am being paid by my government, and I damn sure won't do it if I am being paid by anyone working for Autism Speaks. I certainly don't consider myself of the ND community and I don't know how most in the ND feel about this but I suspect that many might agree.

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