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In Their Own Words – In the Workplace: Expect Ruffled Feathers

June 8, 2010 3 comments

We thought our dreams had come true when our 22-year old son with autism landed a job as a custodian at an Army base just outside of Washington, D.C . Full health benefits, paid vacation, and a starchy new uniform – yahoo! With his intense focus on repetitive tasks and military trivia, he had the makings for a model worker, but our euphoria didn’t last long. After a rocky start, six weeks into it a Human Resources rep called me into her office to say my son was becoming increasingly unreachable, “a pain the neck” for his supervisors to deal with. As a square peg in the round hole of a straitlaced military base, with little or no interest in office politics, he was making for an inscrutable co-worker. What to do?

Here’s the surprise: instead of tossing my kid out, they invited me in to a well-attended managers’ meeting to talk about how to manage autism in the workplace – a first for this forward-thinking service provider company. Topic A: As an employer of people with physical and intellectual disabilities, how likely were they to see an increase of  clients with autism in the coming years?

With more than 730,000 cases of children currently diagnosed with autism in the U.S., I assured them they could expect many more resumés like my son’s to be crossing their desks, and soon. Then someone suggested that perhaps the more relevant question is – if an employee who has autism is missing the piece of the puzzle that engages in typical social discourse, how can a workplace manager bring this new staffer into the fold?

Here’s how I look at it:

1. Start by becoming a noticer. When you see any of these behaviors – the lack of eye contact, the missed social cues, the wrong body language, the impulsivity, the flat affect, or the nervous tic-ing – consider that instead of just being rude or behaving inappropriately, this person may be somewhere on the autism spectrum, and inherently challenged by social expectations.

2. Use concrete language, not abstract images. Don’t talk so much when giving out instructions. People on the autism spectrum are very often visual learners and tend to tune out complicated directions – they frequently learn by watching and doing a task – so don’t be a chatterbox. Because, trust me, at this point the window has closed and he is no longer listening to you. Instead, be blunt. Say the thing you need to say simply and clearly. Then ask him to look you in the eye, (very important), and have him repeat it back to you. If he still doesn’t get it, maybe send him a text message or create a check list to read and keep for reference. Then shadow him. Stand back, watch, and let him monitor his own progress. Repeat as needed.

3. Prepare to have your feathers ruffled and then learn how to shake it off. For example, you might notice my newly employed son steps through that door ahead of you and lets it slam in your face, but this is not intentional or mean-spirited. Instead, remind yourself that being inwardly focused is a big part of what autism is. Don’t take it personally, and learn to let it go. This sounds so much easier to do … time after time … than it actually is. On the other hand, gentle reinforcers of acceptable behavior are always a good idea. Little things, like “Could you get the door for me, David? Now hold it for me until I get all the way through. That’s it!”

4. Lighten up: everyone benefits from a good sense of humor. After wrapping up David’s first week of work, he came upon his supervisor in the parking lot and said, “I’m off the clock now so you can’t boss me around.” The supervisor was initially shocked at David’s impromptu comment, but fortunately, he had a sense of humor. This kind soul didn’t exactly understand it, but he got it, and defused the situation with a good-natured belly laugh.

5. Respect the Two-Foot Rule: Give him room to breathe. Providing two feet of personal space around someone with ASD may be paramount for his peace of mind. So don’t add stress to a situation by imposing your physical self into the conversation. Many people with autism are tactilely defensive with acutely heightened senses and miserably uncomfortable when stuck in small spaces or subjected to loud noises. A handshake is fine but you do not want to goose this young man, or poke, or hug him – I know my son would react to that like he’d been snake-bit. Instead, make a standard handshake part of your daily routine with this individual, so that he knows it’s coming and doesn’t perceive it as an assault. All these things would come out if he could tell his own story, but chances are your new employee is a consistent loner, so he probably never will.

6. Pass it on: make a conscious effort to raise awareness about ASD during staff meetings. As managers of these workers, you will face many of the same problems we families do. Like us, you will have a few triumphs and plenty more setbacks. Be aware that the enigmatic part of autism is also going to create frustration in your staff’s well-meaning efforts to get through to him. Make sure all supervisors of employees who have autism understand that the disability simply is what it is—and nothing more. And yes, there will be times when you find yourself thinking this guy is a jerk or a pain in the neck, but remember to take yourself out of the equation – because (and take it from a someone who really knows) it’s not about you. Then, pat yourself on the back because – as every parent of an autistic child knows – you’ve earned it.

This “In Their Own Words” essay is written by Glen Finland. Glen is the author of Next Stop, a memoir about raising her son, who has autism, to adulthood and learning to let go, forthcoming from Amy Einhorn Books/Putnam in early 2011. Read another blog post by her – In Their Own Words: What Happens When I Am No Longer Here?

Please visit our Advancing Futures for Adults with Autism initiative at www.afaa-us.org and “like us” on Facebook, where we regularly post articles and items of interest regarding adult issues and services.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Measuring Outcome and Addressing the Needs of Adolescents and Adults with ASD

June 3, 2010 4 comments

This is a guest post by Ruth Carper, Ph.D. Dr. Carper is a member of the research faculty of the Center for Human Development at the University of California San Diego (chd.ucsd.eduradlab.ucsd.edu). She is beginning a study on the cognitive and behavioral changes that occur in people with ASD over the age of 30 years, and on the support services that are available to people in this age group.

Kids with ASD get lots of attention in the media, in research, etc. But what happens when those kids are 20? Or 40?  These kids we see today will grow up, do grow up. They will become adults, some able to function independently, go to college, and have “normal” lives.  Others will move to group homes or supported living services, and some will stay at home with family. But they will grow up and there are a great many issues that families must contend with and plan for and a great deal of information that service providers and scientists don’t yet have.

In the past, studies of long-term outcome in adults with ASD only looked at very basic measures. Outcomes were classified as ‘good’ or ‘poor’ based primarily on independence – holding a job, living outside of the parents’ home – and simple measures of overall intelligence.  While this information is useful, it doesn’t provide much detail about how relevant symptoms and specific abilities change during adolescence and adulthood. Social skills often improve, but we don’t yet know to what degree, or whether skills continue to improve across the lifespan. Repetitive behaviors are thought to diminish or change in quality. Only recently has research begun which will help us to understand how symptoms and abilities change as people with ASD grow up.

At the recent International Meeting for Autism Research (IMFAR), the special Educational Symposium “What Really Matters: Measuring Outcome and Addressing the Needs of Adolescents and Adults with ASD” introduced some of these issues. (The symposium was organized and moderated by Drs. Patricia Howlin and Peter Szatmari. Presentations were given by Julie Taylor, Themba Carr, Somer Bishop, and Kaite Gotham.) While a short symposium can only scratch at the surface of such a broad topic, the information offered was informative and is summarized below. However, the thing that struck me most about the session was that it was standing room only, showing the growing interest and attention that will be paid to the needs of adults and adolescents with autism.

The transition to adulthood

Our education system provides appropriate (more or less) training as mandated by IDEA until the child reaches 22 years of age. But access to services changes drastically after that, with many services no longer available to young adults. This time of transition can have a major impact on young adults with ASD and on their families.  Any parent reading this blog knows that change can be quite stressful for an adult or child with autism.  The drastic changes to daily routine, structure, and social opportunities can affect mood, anxiety, and behavior.  One study examined the challenges that occur during the period as the individual exits the school system.

The daily routine, structure, and social opportunities that are provided by the school setting, as well the behavioral interventions that may be implemented there, generally help to improve the child’s social skills and behaviors.  Not surprisingly, the loss of these opportunities reduces the rate of that improvement and may even result in setbacks.  Researchers followed a group of children and young adults during their school years and saw a continuing reduction in the frequency of unwanted repetitive behaviors, ongoing improvement in pro-social behavior, and improvement in internalized behavior.  Unfortunately, when these children left high school, their rates of improvement slowed substantially.  For the most part behavior didn’t get worse, but the change in rate suggests that further gains may have been possible but that those opportunities were missed.  If structured services were more available for adults with ASD, substantial gains might continue.

Depression

In addition to the behavioral and cognitive issues that define autism, additional problems may arise.  The challenges of living with autism can produce anxiety and depression both in people with autism and in their families and caregivers.  This may be particularly problematic for higher functioning individuals. Even among adults who do not have autism, greater awareness of one’s own social limitations or poor social skills, is known to correlate with depression. Higher functioning people with ASD generally have greater insight into their own limitations and that may affect mood or produce anxiety. Insight into a person’s prospects for independent living is also a predictor of depression.

More cognitively impaired people with autism may be somewhat protected from these secondary stressors simply by being less aware of their own limitations. But it’s difficult for us to know. Communication skills are poor of course, but it’s particularly difficult for them to communicate about abstract concepts such as emotions. A range of emotions is certainly felt, but can’t be described in words. And the overt symptoms that can be indicators of depression in young children with similar language difficulties, may not be telling in autism. Typical hallmarks of depression such as changes in appetite or sleep patterns are often abnormal in ASD even without depression.

Effects on the family: Cultural differences

Having a child with autism, whether he is still a child or is an adult, can have a substantial effect on the life of the parent.  Family relationships can be affected, friendships, activities, and finances, can all be affected.  In a survey of parents, mothers were asked to reflect on the degree to which their child’s ASD had affected their own lives and compared the effects reported by African American and Caucasian mothers of different levels of education. Caucasian parents generally reported a greater negative impact on their daily lives than did African American families.  The moms that reported the least negative impact were African American parents with less education (e.g. high school as opposed to college).  This suggests that these families are better able to cope on a personal and emotional level than other families. This is somewhat surprising given that these moms probably did not have the same financial resources that are typically available to families with more education. This may also be surprising in light of the reported difference in services utilized by these families. During the school years, Caucasian children with ASD receive many more hours of treatment outside of school than do African American families. However, it is unknown if this reflects a true difference in access, or is a result of the lower perceived impact.

Summary

This two-hour symposium was only able to discuss a small part of the very large topic of adolescence and adulthood in autism. We still need to know more about how abilities and symptoms change in the longer term, into middle age and even into senior years. Families still need to know if sufficient care services are available and are appropriate for their adult children. We need to know what interventions, training programs, and other support services are most effective for improving quality of life. Fortunately, funding agencies, such as Autism Speaks and the National Institutes of Health, are now directing effort toward these issues, specifically asking for more research on later portions of the lifespan in autism. Where funding goes, research will follow, so we can expect a better understanding of these issues in the coming years.

Please also visit our Advancing Futures for Adults with Autism initiative at www.afaa-us.org and “like us” on Facebook, where we regularly post articles and items of interest regarding adult issues and services.

To read complete coverage from IMFAR, please visit http://www.autismspeaks.org/science/science_news/imfar_2010.php.

Destination: Independence

June 2, 2010 2 comments

To date, Autism Speaks has funded $1.9 million in Family Services Community Grants to more than 100 service organizations around the country in the areas of education, recreation; equipment/supportive technology and young adults/adults.  The following is from one of our recipients from 2008, the Asperger’s Association of New England which serves individuals with Asperger Syndrome throughout New England:

The Asperger’s Association of New England, or AANE, is very grateful for the generous grant from Autism Speaks that allowed us to offer the Destination: Independence program. Destination: Independence consisted of a series of four courses on independent living skills, reinforced through one-on-one coaching under AANE’s Life Management Assistance Program (LifeMAP). Destination: Independence was designed to meet the practical needs of young adults with AS, who tend to be less mature than neurotypical young adults, are often stuck in their attempts to establish independent lives, and are less likely to be able to resolve their problems though traditional interventions such as “talk therapy.”  Participants were able to learn independent living skills in a hands-on manner; learned life tasks with the assistance of a coach; increased independence; and employed problem-solving, social interaction, relationship building, and social pragmatic skills.

One participant wrote on his evaluation form:
I wanted to give you a little feedback on what I am working on. As you may know, I am going to graduate from college in May and I do not think I would have passed this last course without the help of Destination: Adulthood and my LifeMAP coach. So I accomplished that goal. Now, I am working on volunteering at the JFK library and getting a part-time job. Thanks for the help, T.

Another wrote:
My LifeMap coach and I have been working on me learning how to use transportation which I think that I could still use practice on. We also worked on going grocery shopping and making healthy food and drink choices at the grocery store! She was helpful with my goals and I would like to continue to work with her.

A coach wrote:
I see increased confidence in the client due to my (the coach’s) validation of her struggles and challenges, and due to success in overcoming of obstacles. We are close in age and so I found that the client looked up to me like an older sister or just a role model. I noticed that my compliments and acceptance of who she was and my encouragement for her attempts at finding a job, acquiring a driver’s license, etc., helped her accept that while her pace might be slower than her peers’ she would eventually get there.

Another coach wrote:
The client, a recent (out-of-state) college graduate, was also very isolated and had the goal of maintaining social relationships, but it became clear that she did not have local relationships to maintain. The coach accompanied her to events at AANE initially, and eventually she began to attend on her own. The coach’s involvement in getting the client to come to AANE was instrumental in making new relationships and eventually led to the client joining a weekly AANE support group and connecting to a therapist through AANE as well.

Congratulations to AANE and Destination Independence on their wonderful program!

Autism Speaks in currently accepting Letters of Intent until June 10, 2010 – get those great ideas in to us so we can continue to serve the community!  Please also visit our Advancing Futures for Adults with Autism initiative at www.afaa-us.org and “like us” on Facebook, where we regularly post articles and items of interest regarding adult issues and services.

In Their Own Words – Adults Still Need Help Making Friends

May 20, 2010 23 comments

When people learn that my 23-year-old son, Matthew, has autism, the first question they ask is “is he mild or severe?” Even though I’ve been asked the question many, many times, I have a hard time answering it.

“He’s super quirky and socially inept,” I’ve been known to say, “and he wants a girlfriend in the worst way. It’s nearly impossible to make any kind of friend when you’re socially inept so I guess that makes his ‘case’ severe.”

Then I’ll give them an example. Here is my latest:

I took Matthew on a weekend trip from our home in the San Francisco Bay Area to Spokane,  Washington. He’s been obsessed with visiting every state in the U.S., and after studying his atlas, he figured we could hit Washington, Idaho and Montana all in a day with time for lunch at a place where he could order pizza and fries.

“We could even go to Canada,” I suggested.

“Canada is not a state. Only states,” Matthew replied flatly, “and we’re not going to talk about it anymore.”

As soon as our plane landed, we picked up our rental car and started our journey, listening to Roy Orbison, the Beatles and Jimmy Buffett CDs that Matthew had stowed in his backpack. There was little conversation except for when we saw state welcome signs. “WELCOME TO IDAHO!” Matthew would announce with a face-breaking smile. Those moments alone, along with the breathtaking scenery, made the trip worthwhile. I was struck by how well this trip was going. I was actually looking forward to the fact that we had another entire day to explore the area some more.

After turning around after the Montana border, I asked Matthew where we should have dinner. Idaho or Washington?

“We had lunch in Idaho. We should have dinner in Washington.”

When we arrived at out hotel in Spokane and asked for a restaurant recommendation, the trouble started.

When I planned the trip to Washington, I could never have known that the hotel I picked was also the hotel that a team of female college lacrosse players had also selected, and that they would be bouncing around the pool (right by the front desk) in bikinis. I could never have known that they would mistake handsome Matthew for a “neurotypical” 23-year-old man, and invite him to join them in the jacuzzi later. I could not have predicted that after a quick dinner in the hotel restaurant, Matthew would wait by the jacuzzi for two hours until the girls showed up, and that they would giggle nervously when they figured out that Matthew was not what they expected – and then vanish.

Once back in our hotel room, as I tried to comfort my sobbing son, I thought of all the times I had said “don’t worry. You’ll meet a nice girl someday.” It occurred to me that the only way that if Matthew was going to have any kind of a friendship with a woman, I was going to need to help him.

And I developed a plan.

To learn more about my plan, and to follow its progression, go here.

Will the road ahead be tricky? You bet! But it is worth traveling for the sake of all our kids as they face adulthood.

Wish me luck.

This “In Their Own Words” essay is by Laura Shumaker. Laura is the author of “A REGULAR GUY: GROWING UP WITH AUTISM.” Join the discussion about her book on Facebook.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words: What Happens When I Am No Longer Here?

April 8, 2010 55 comments

My autistic son David, now 22, has finally mastered the Metro transit system here in the nation’s capital. He is also a runner who jogs alone on the Potomac River’s neat footpaths, cutting like a ribbon through tourists flocking to the Mall for the Cherry Blossom Festival. Recently, David got his driver’s license, but to ensure that he never takes more than one person for a ride, we pulled out the back seat of his little Jeep Wrangler and so far, I have been his only passenger. And there’s the rub: mastering the skills for doing things by himself has catapulted him into an ever-deepening world of aloneness. Now, everywhere he goes, roaming farther and farther into the world, he goes solo. Hardwired to protect him, this is proving more difficult for me than for him.

For years we fought side by side, battling for the right school, therapy, job coach, and lately, housing. Now, as he moves toward greater independence as an adult, the number one concern my husband and I have for our son is his growing isolation.

The supreme dread for us, and for every middle-aged parent of a special needs adult, the singular ache that dries the mouth and races the heart at 3 a.m., is loneliness: Who will offer my child a healthy, loving touch when I am no longer there? Who will care if he has not made it home by the end of the day? And if there is no one, will there be a safe shelter for him somewhere? 

The fact is, middle age is scary. Bruce and I are thirty-five years older than our son, and we have no way of knowing how things will play out for him long after our bones have dried. Nonetheless, it is time to delve into the basic civil and legal rights of and for our special needs adult son. And knowing what we know, we have made some plans.           

I anguish still over our decision to assume the limited legal guardianship of David’s life. This controls four basic constitutional rights: his right to vote, to marry, to choose his religion, and, God help us, his right to own a gun. For each of these civil liberties he must have our written consent. On the one hand, it pains me to think our guardianship could further stigmatize him. On the other hand, guardianship is an important instrument that will help protect him from a predator’s grasp. The question of whom to appoint as his financial trustees in the event of our mutual deaths is even more worrisome. The stakes are high here and the people we are asking to step in for us must be reliable, empathetic, and, to my mind, heroic.

No one looks forward to time spent thinking about his or her own death. But as overwhelming as the process is, in the final analysis, there is relief, not dread, in wising up and finding new ways to think about securing David’s future. Bruce and I have visited the good attorney’s office on three separate occasions now, sifting through the process’s tedious language, having heart-to-hearts with friends or family members who might be willing to assume a part of this enormous burden in our stead. Three or four times we have set a date to meet each other at our kitchen table to wade into the binder protecting David’s future. Three or four times we’ve let something get in the way before we can finish the task.  But slowly, we’re getting there.

And yet, we’ve come to believe the flip side of David’s autism is its saving grace. Perhaps the disquieting things that keep us up nights do not register in David’s mind. The worry-free bubble in which he lives is almost enviable, a protective shield from anxiety. We know our son doesn’t lose sleep over what would happen if his SSI payments were slashed, if his Medicaid benefits dried up, or even how he’d get home if he lost his Metro card again. For us these are very real qualms, yet somehow manageable because they do not begin to approach the darkest monster coiled under the bed: who will love him when we are gone?

On the other hand, we know the immense pleasure of what David does have – those strong runner’s legs of his and a good support system in his two older brothers – and we recognize how much harder so many other special needs children have it. When David comes in from a night run and wolfs down a box of cereal before heading off alone to his room, I feel wonder and awe for what he can do.

But like our cat, he allows me into his presence only on his terms. Neither selfish nor mean, he’s simply not needy. For example, he’s never said that he loves me, but the gift of his love is not mandatory for our allegiance because I yield to a certain unknowability in this young man. I accept that his emotional life will continue to be a mystery because he will always live on this one-way street. 

And yet, deep in my heart, there is still an ache for what could have been for him and will never be.

This “In Their Own Words” essay is written by Glen Finland. Glen is the author of Next Stop, a memoir about raising her son, who has autism, to adulthood and learning to let go, forthcoming from Amy Einhorn Books/Putnam in early 2011.  

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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