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Posts Tagged ‘Adults with Autism’

Roses for Autism

February 16, 2012 Leave a comment

The mission of Roses for Autism is to grow independence in the business world through a replicable Autism training and employment program integrated in a successful and sustainable rose business. The vision is to demonstrate a replicable working model for inclusive transitional employment for youth and adults on the Autism Spectrum. In 2011, Autism Speaks awarded $25,000 to Roses for Autism through its Family Services Community Grants program.

Roses for Autism is a unique venture, combining training and employment of people on the autism spectrum with the growth and sale of flowers. This is a business that not only employs people; it employs people who have an unacceptably high level of unemployment. The project location is Pinchbeck’s Rose Farm in Guilford, CT.

Roses for Autism is unique, integrating three businesses in a single enterprise:

  • Employment and training for people with Autism Spectrum Disorders
  • Agricultural – Raising flowers in the country’s largest free-standing glass greenhouse
  • Sales – Rooted in autism cause-based marketing

Over the course of the grant period, we have learned:

  • It is not only the lack of job skills, but also the lack of social skills that hamper success in the workplace.
  • It takes time to successfully develop individual strategies for participants and transfer them to general work environments.
  • It is essential to offer other resources to participants outside of employment strategies.
  • Participants gained confidence, school grades improved and participation in the program is having a positive impact on people’s lives.

Demonstrating success:

Incidental reports from families, schools and program staff noted that some participants are reporting and/or exhibiting increased confidence, better grades in school and motivation to be more social. In some instances, participants are forming friendships with peers, staff and/or customers. One unexpected and extremely exciting success is the young man who after being driven back and forth to the program by his mother, learned to navigate public transportation to get to work independently. Desiring still more independence, he recently secured his driver’s license – a goal that was beyond his wildest expectations. He is now working toward saving his money from his job at the rose farm to buy a car.

Roses for Autism currently employs eight individuals on the spectrum that are working in an integrated environment for competitive wages. During 2011, 290,500 roses were sold.

For more information, please visit www.rosesforautism.com!

The grant cycle is officially open on February 17.

To learn about our newly announced RFA for Family Services Community Grants, please visit http://www.autismspeaks.org/family-services/grants/community-grants

Adults with Autism: Sharing Ideas, Filling the Gaps

January 30, 2012 30 comments

Guest post by Merope Pavlides, editor of AutismAfter16.com, author of Animal-assisted Interventions for Individuals with Autism and mom to two sons, one of whom is on the autism spectrum.

Autism is not a condition of childhood. Autism follows the person. It follows the person into the workplace, the community, adult relationships and health care. Until recently, however, little attention has been paid to issues surrounding adulthood with autism. Fortunately, we have now begun a national dialogue, and Autism Speaks is bringing its voice—and resources—to the discussion in a big way.

On January 26th, Autism Speaks held a research summit entitled, “Adults with Autism: Sharing Ideas, Filling the Gaps,” in Chapel Hill, NC. The event was co-hosted by Extraordinary Ventures, a model employer of adults with autism. Extraordinary Ventures was founded by Autism Speaks supporters and parents Lori and Gregg Ireland.

The meeting brought together many premier scholars on adult autism issues, as well as Autism Speaks representatives, autism service providers, parents and donors. My husband, Peter Emch, and I were invited to participate as parents and long-time supporters of Autism Speaks. The very fact that Autism Speaks included parents in an event like this is hugely meaningful, because it grounds the research agenda in real-world experience and need.

Moderated by Autism Speaks Chief Science Officer, Geri Dawson, Ph.D., the meeting provided the opportunity for investigators to present overviews of current research projects funded by Autism Speaks and for all participants to ask questions and share ideas. The morning session showcased studies aimed at describing autism spectrum disorder (ASD) in adults, while we spent the afternoon with prescriptive research involving topics such as how to improve interventions.

Morning keynote speaker Marsha Mailick Seltzer, Ph.D., of the University of Wisconsin’s Waisman Center, outlined “Trajectories of Development in Adolescents and Adults with ASD.” Afternoon headliner Paul Shattuck, Ph.D., of Washington University, discussed “Service Use and Outcomes among Youth with ASD.” I found it interesting that both Seltzer and Shattuck noted that, despite few published studies on adults with autism, there is an abundance of data awaiting analysis. This means that we need to be investing resources in finding the meaning in the information that’s already available.

As a parent of a young adult with autism, it’s gratifying to sit in a room with so many smart, energetic people and learn that they want to bring their talent and enthusiasm to bear on the same issues that worry me as a parent. I’m also a special educator. As such, I’m so glad to see researchers demonstrating concern for how academic findings translate into real-life practice. While it’s crucial that we continue to deepen our understanding of what life is like for adults with autism, it’s just as important to make immediate progress in improving their lives.

I was especially excited to hear so much conversation on the topic of our adults as learners. As a society, we tend to think about the autism service system for adults as involved exclusively in care giving. Rather we need to develop dynamic supports that provide ongoing opportunities for personal growth and development. The summit allowed those who are studying adult needs to connect with those who are examining skill-building models. It’s this type of collaboration that fosters new programs that not only look good on paper, but also work in the real world.

Finally, participating in an event like this reminds me of how important it is for families to understand that they are integral to the research process. Sometimes we feel as though investigators go about their work in ivory towers without understanding the real needs of those on the ground. As families, we must be active participants in the research process. Not only in the sense of filling out questionnaires and providing information, but in terms of actively making use of the knowledge emerging from this research. That doesn’t mean we need to bury our noses in scholarly journals. It does mean that we need to enter into thoughtful discussion with scientists about how to incorporate what they are learning into what we need from adult service providers. Good scholarship is being conducted through Autism Speaks funding. As a community, let’s not allow it to happen in a vacuum.

[Editor’s note: Thanks to our grant search engine, you can explore Autism Speaks-funded research concerning adolescents, adults and related services here.]

Autism’s “Fly-Over” Population

January 4, 2012 72 comments

This is a guest post from Mark L. Olson in response to the New York Times article, ‘Navigating Love and Autism.’ Mark lives in Henderson, Nevada where he is the only parent of a 16 year old daughter with autism; Chairperson, Community Living & Employment Subcommittee, Nevada Commission on Autism Spectrum Disorders; and, President & CEO, LTO Ventures, a 501(c)(3) nonprofit company developing live/work/play communities for adults with autism.

I read with mixed emotions the December 26th New York Times article “Navigating Love and Autism” about Jack and Kirsten, a young couple with Asperger’s Syndrome discovering how to have a relationship with each other.  The romantic in me found their story inspiring and hopeful.  But as the only parent of a teenage daughter with autism, another part of me felt frustration about the lack of attention to and help for autism’s “fly-over” population — the huge group of teens and adults who are often nonverbal, may never expect to live independently, yet deserve the chance to choose the kind of life they want to live.

“Fly-over” is a term I heard often growing up in the Midwest and attending University of Kansas.  It refers to the majority of the US between the East and West Coasts that airline passengers look down on when they fly over.  It also refers to a mindset in the media that the most valuable audiences are located in New York and Los Angeles, and to which their programming overtly caters.

Autism is a broad spectrum disorder just as the U.S. is an expansive land mass and melting pot.  A favorite expression in our community is that “if you’ve met one person with autism, then you’ve met one person with autism.”  Our community and efforts to help persons with autism benefit from all the awareness we can generate, but sometimes it feels like that attention falls largely onto two ends of the spectrum.

At one end, thanks to organizations like Autism Speaks and others, kids as young as 18 months benefit from more research dollars than ever directed toward finding the cause of and a cure for autism, while insurance mandates are in effect in the majority of states that emphasize funding for ABA therapy and early intervention, diagnosis, and treatment.

At the other end of the spectrum are the Aspies and HFA teens and adults like Jack and Kirsten who are the focus of media coverage, movies, federal programs such as Medicaid and the President’s Year of Community Living.  They are also the primary beneficiaries of the Protection and Advocacy (P&A) Network created by Congress and self-advocacy organizations bent on eliminating all barriers to living and working exactly the same lives as “typical” Americans.

But what about the fly-over population?  My daughter is one of them and we live this struggle every day.  (I also run my own 501(c)(3) nonprofit company developing live/work/play communities for adults with autism and chair a subcommittee for the Nevada Autism Commission on community living and employment.)  I see this issue from many perspectives and I’m increasingly disheartened by the chasm of resources and choice expanding between our community’s newest affected and our most capable.

My daughter is 16 and nonverbal, although she can hear and understand some of what is said to her.  She’s not high-functioning enough to enjoy true independent living, and diagnosed at age 12 she was too old to benefit from aggressive early intervention protocols.  I expect she will stay in her special needs school until her IDEA eligibility runs out and we are planning for guardianship now. But I’m also 39 years older than her and while I like to believe I’m immortal, I’m pretty sure I’m not.  So that means planning for where she is going to live, what kind of work she might do, and what chance at a social life she can expect.

Let’s start with housing options.  My daughter deserves the right to choose any residential setting in which she wants to live.  It is estimated that 85% of adults with autism live with parents or a family member until they can no longer be taken care of.  As with many kids with autism, there are daily living skills she does well, and others (bathing, feminine hygiene, house cleaning) that are a challenge. Some disability self-advocates argue her only option outside of my home should be in her own apartment or home no closer than 1000-1500 feet from any other disabled person.

She can’t live alone in a scattered site apartment because she doesn’t know how to cross a street safely, or how to avoid neighbors who might bully, exploit, or abuse her.  It’s a ludicrous notion to expect her neighbors to be her “it takes a village” safety net.  She can feed herself, but she cannot use a stove or microwave to prepare a hot meal.  A setting where she could go to eat or pickup meals of her choosing would be ideal.

A planned residential community optimized to accommodate her autism such as a disability-based campus or farmstead would be a great solution.  Unfortunately, Medicaid, certain self-advocacy groups and the P&A Network are doing everything they can to deny her freedom of choice and impede development of innovative settings. (Read more at “Choice v. Olmstead“)

Now let’s talk about work.  My daughter is blessed with exceptional physical strength and decent gross motor skills.  With supervision she can do fine motor projects and follow multi-step instructions…for a while.  But she cannot speak, read or write.  She will never be able to pursue competitive employment on the open market, but that doesn’t mean she can’t earn a minimum or higher wage.  A work environment created to accommodate and develop her abilities would be ideal.  But again the same forces are at work to eliminate these optimized settings as discriminatory.

Would she like a social life?  A relationship like Jack and Kirsten?  I don’t know.  I do know she is highly sociable and enjoys the company of affected and typical kids and adults.  A setting where she could freely walk around, meet up and hang out with persons like her and enlightened members of her surrounding community would be ideal.  But transportation, availability of programs, and lack of funding marginalize anything except a public park or shopping mall.

Jack and Kirsten’s story is informative and heartwarming.  But as we enter 2012, I implore the autism community, media, government and especially those self-advocates who resist progressive thinking and innovation, to not forget the impact they have on our “fly-over” population.  Their story deserves to be told too.  They deserve the right to choose how they want to live.

———————————–

For more information:

LTO Ventures

Community Living & Employment Subcommittee, Nevada Commission on Autism Spectrum Disorders 

George Braddock Chat Transcript

November 21, 2011 2 comments

On Monday, November 21 George Braddock hosted a live chat about how to advance community living for adults on autism spectrum.

George Braddock is President of Creative Housing Solutions LLC. He pioneered the implementation of person-centered planning principles to homes for people with disabilities. George provides environmental engineering services for persons with intellectual and physical disabilities, families, providers and governmental agencies.

1:55
Hi Everyone! We are about to get started!
1:56
Comment From Sip

hooray :)

1:56
Comment From Guest

Great!

2:02
This is George Braddock and I am welcoming everyone to this chat. My background is construction and I started doing housing for people with developmental disabilities in 1984. In 1985 my daughter was born and she has developmental disabilities. Since 1984 my company has done over 1,500 projects for people with developmental disabilities. We are very committed to serving individuals in our communities and keeping families together. We believe that the roll of the physical environment in supporting that outcome has been underestimated.
2:02
Comment From Elizabeth Wilson

I am having a hard time potty training my son who has autism. He won’t go on his own, I have to take him on a routine bases. is there any suggestions on how I can help him at night, because he doesn’t sta dry at night

2:05
Hi Elizabeth – One of the barriers that we often find for people in toilet training has to do with the condition of the bathroom itself. Often times we find that people with ASD can be very tactfully defensive so the space itself needs to be as neutral as possible. It needs to be enough room around the toilet so people don’t feel too confined. It is really helpful if the space is warm and you address other types of sensations around the toileting experience. Is it cold, is there a fan running, is the light too bright, or not bright enough? You can sometimes help encourage people to use the toilet a friendly place to be.
2:06
Comment From Raissa from Georgia

What are some of the standard remodeling things you do for families with younger children with autism? Also, as my children get older, what home modifications start becoming more of a necessity as they enter adulthood?

2:12
Hi Raissa – although we recognize that every individual with autism is unique, our experience has taught us that there are actually quite a lot of common housing modifications that generally support most folks with ASD. We call them unique commonalities. We have identified six of those commonalities. We can start off with the most common modifications – the Autism Friend Home – the goal is to reduce risk and anticipate activity. Every home there are things that can hurt people. We want to focus on health and safety where the individual is the priority. Sometimes in addressing a home we have to assess the risks and dangers depending on the individuals circumstances from the start. These include things like seizures, the importance of protecting the person’s body from injury. We also find that it is good to anticipate unconventional use and eventually housing is not designed for simply people with ASD. We anticipate water play. Water is almost always a source of interest. It is often a coping skill for folks with ASD and we need to manage it to keep the water from damaging the home, but also support the person who is using water to satisfy them. We find that doors are often a problem. The way the slam, the way they communicate frustration and anxiety. We use pocket doors quite frequently and fiberglass doors because they are light weight and strong and not as likely to hurt you. It is important to select furnishings that take into account the individual involved. Often times vesicular activity such as swimming, rocking, jumping, bouncing, making sure the furniture will put up with those things. Those are the basics of an autism friendly house!
2:13
Comment From Karen

My son who is 17 and has more “classic autism” is very adversely effected by certain sounds. Even though his bedroom is downstairs in the basement, he hears the television through the floor upstairs, and even the slightest TV sound bothers him. We could all use headphones as a solution, but I was wondering if you had ideas on sound insulation techniques for our home. We already have carpets but the sound still travels between the two floors. So if he is up at night rambling outloud to himself, we can hear him through the floor, and it keeps us up, and he can hear our TV, even on low, and that keeps him up.

2:18
Hi Karen – The key to sound deadening is separation so that sound waves cannot move continuously through. There are a number of materials that will help in this regard and there are also construction techniques that will provide a space between materials to control transmission of sound. There are products, mass laden vinyl, which is a very dense, rubberlike material that is quite an effective sound deadening material. It could be placed on the carpet or on the ceiling between floors. There is type of channel where there is a resilient channel that can be installed and has a little rubber isolating block on either end of the bracket. That can be screwed to the ceiling and then the dry wall ceiling plied to it will deaden the sound between the floors. We have also had some luck with a cork material applied over a material that is like a fiberglass that can be up to half an inch thick. Then the cork panel can be attached.
2:19
Comment From Guest

What can extended family members do to make their homes more “ASD-friendly”?

2:23
Hi Guest – If you are going to have guests in your home with ASD it would be wise to understand some of the issues before they come to visit. It is likely that they will arrive anxious and experiencing some stress. It can be helpful to not too much pressure on them when they first arrive. If they are disorganized, they tend to live more rigorously in their environment, you might want to take things away that are easily broken. Typically we find from about 3 feet about the floor to about 5 feet above the floors, is the area where most handling, grabbing, and exploring takes place. From leaving fragile things out of this zone can help. Trying to manage the amount of stimulation, from televisions to radios and other things that are making noise, flashing lights. Just being aware that an overly stimulating environment results in more anxiety in the visit. If you can create a place where they can participate in usual activity and have some control over their social interactions, it can make for a better visit.
2:25
Comment From Cynthia Bartlett

Do you find that adults with autism/intellectual impairments respond differently to various colours and lighting types?

2:30
Hi Cynthia – We definitely have found that color can make a great deal of difference for some people with ASD. We spend quite a bit of time trying to figure out colors that work and are preferred. We can do this by observing a person’s choices when various colors are offered. Some of the standard thinking around the impact of color attaches reds, yellows, and oranges to more high energy activity. Whereas blues and greens and browns tend to be more calming. In the area of lighting there is good evidence that flickering lights often associated with florescent can be a problem for some people. If possible divide lighting sources with dimmers which gives a person more control. Good quality natural and artificial light are key to a good environment.
2:30
Hi everyone there was a typo in my first answer to Elizabeth! I meant to say, Tactilely-this means relating to the sense of touch, rather than tactfully!
2:31
Comment From Jody Schinnerer

Our 19 year old son finds our walls a good target when he gets frustrated. He has punched and kicked holes in the wall. He hasn’t hurt himself yet. We patched the holes and repainted but are there materials that would prevent injury to our son if he continues to hit the walls??

2:37
Hi Jody – Damage to walls is not an unusual behavior. There are a number of strategies that will make walls that are strong enough to withstand this kind of testing. There are various layers depending on how serious the person is about making holes in the wall. Sometimes if the person is just hitting the wall or kicking it occasionally, as opposed to all the time, you can add a protection material called wainscoting. This can be fiber glass reinforced plastic called FRP or solid wood panel. In some cases even carpeting glued to the wall will work. For people who are more determined to make a hole in the wall, strong building enforcement will be necessary. This can include adding the additional layer of Sheetrock or removing the existing wall finishing material and reinforcing the wall assembly with plywood. Then any number of finishes can be applied to the ply wood to make a normal looking wall. In cases where people may injure themselves from hitting the wall we have applied a half inch of foam to the wall and then protected the foam with a material such as FRP or kourguard.
2:38
Comment From Dina

Hello. I have a 19 yr. old son, who is in the mild/ mod category of Austism. He is developmentally 8 yrs. old. He has a terrible fear of separating from us. Ian suffers from the extreme anxiety that is typical if the disorder. My husband and I can’t bear to think of placing him in his own living environment. Do you have an opinion about how to best address this situation?

2:41
Hi Dina – We have had good success on a number of family homes by creating a living space for a young person with ASD within the family home. Sometimes this is an addition onto the home that accommodates the small living space usually a bedroom, bathroom, and sitting area over which the person has control. This area is designed to support their interests and lifestyle preference. We have found that as people mature, they naturally want to have some separation from their family. Even if they remain in the same home. We call it expanding the family. We have had a number of these projects prove successful in the last 15 years.
2:43
Comment From Sip

I’m very sensitive for sounds too, at night even the slightest whisper can wake me, and I can recognize people by feetsteps…and smell,that’s also trouble sometimes for me, too much different impulses at the same time is annoying

2:47
Hi Sip – Sound proofing at this level is very difficult. A room can be quieted using acoustical panels. These can be loosely attached to the wall and ceiling. There is also a sound deadening glass that can be installed in windows. This is very expensive. For some individuals white noise or preferred sound background can mask the sounds that are troubling. Solid core doors with weatherstripping or smoke seals can also help quiet the space and keep unpleasant odors out of the room. Drapes or curtains also deflect sound. Good quiet ventilating fans int eh room can also address most of these issues.
2:48
Comment From Andra

My son is 18 yrs old and has high functioning Autism. He is developmentally about 9 years old. He wants to eventually live on his own but I am concerned about what kind of environment to put him in that will be supported. Are their community types that I should look at? Are there commmunities out there that can provide for my son?

2:53
I think this issue is one of the most troublesome for families. What kind of living opportunities are going to be available for their children when they choose to leave home.Developing inclusive communities is what we all need to be involved in. People need more than an affordable house, they need a place in the community. Often times, only conventional housing is available. Housing modifications tend to focus on physical disabilities. People with intellectual disabilities need environmental modifications as well and their effect can be as profound. Much work needs to be done to educate builders and developers to make this a reality. Living in a community means not just creating more set asides, but creating real neighborhoods where people with disabilities are welcomed and valued. This means encouraging individuals involved with all kinds of disabilities to work together to support the creation of these kinds of inclusive neighborhoods. Not neighborhoods that congregate people with disabilities, but are welcoming of that diversity because involvement within this community is part of what defines community.
2:53
Comment From sherry wine

i have a 12 yr old son with autism he dont wanna go to bed at night time he wants to stay up and play games and gets on the computer and he wats to talk back any suggestiond

2:56
Hi Sherry – this is a situation where we have had some success with technology in the past. Being able to exercise some control over access to games and other activities is sometimes necessary while people build the capacity to manage those situations themselves. A computer providing information for controlling a device is different than mom and dad turning it off. I think of it a little like the difference between getting a ticket in the mail when you run a traffic light. You are angry, but your anger is not directed at another person. Supporting an individual to make the right choices requires balance and good judgement between freedom and appropriate, healthy, behavior.
2:57
I appreciate this opportunity to be involved in this chat and hope people found the information useful. Included with this chat is contact information to my website and links to the Autism Speaks network. Thank you for your attention!
2:58
George’s guide: Making HoMes tHat Work a resource guide for Families Living with
autism spectrum Disorder + Co-occurring Behaviorshttp://www.afaa-us.org/atf/cf/%7B3A65C524-1EB0-4098-97F5-88AB429252C6%7D/Making%20Homes%20That%20Work.pdf
2:59
For more information on George: http://gbcchs.com/
2:59
Check back to the Autism Speaks website,www.autismspeaks.org for updated information on housing!

In Their Own Words: Treasure What You Have

November 21, 2011 3 comments

This is a blog post by Lena Rivkin, M.F.A., is an artist and graphologist living in Los Angeles.

Saturday was the Pumpkin Festival.  As my brother and I wandered around looking at the colorful, wildly shaped pumpkins and gourds, I realized that Halloween is the harbinger for the upcoming holiday season.  While other families carve pumpkins and scheme over costume ideas and how to keep the sugar intake to a minimum- my brother will be needlepointing his heart out.  While other families excavate Halloween and holiday decorations from boxes in the attic, Phillip will be obsessively crossing days off of his large collection of calendars.  While we all ramp up our already hectic schedules to include gift ideas, holiday outfits and double-book numerous get-togethers, it is slightly different for those of us who have special-needs family members.

My brother, Phillip, is a severely autistic adult and lives in a group home in North Hills, California, administered by New Horizons, a non-profit organization dedicated to helping adults with developmental disabilities.  Phillip also attends a day school called Tierra Del Sol Foundation. The 9th Annual Fall Festival was a fun way to raise funds for Phillip’s day school.  Among the great line-up of entertainment was Murphy’s Flaw Band- a terrific bluegrass group and gorgeous Aztec dancers that dazzled the eyes and ears.

Phillip really loved looking at the ceramic crafts hand-made by him and his classmates.  It takes a subtle eye to recognize what Phillip really enjoys since he doesn’t speak and willingly goes along with pretty much everything I suggest.  Sometimes I feel like the narrator of his life. “Isn’t this a beautiful mask, Phillip?” or “Phillip, are you ready for lunch?”  He’ll nod a sort of yes to everything I ask him, especially if it relates to food!  Or I can tell by another look in his eye that he appreciates what I am seeing or is ready to see something else.  When I am with Phillip, if I still my inner voice and erase any personal agenda, I can hear him with my eyes and appreciate exactly who he is, not wish him to be who he simply will never be.

The holidays matter to us as well, just a little differently than everyone else.  When you have a sibling who cannot speak, make direct eye contact or give a hug, a Gap Gift Certificate doesn’t quite manage to bridge the gap.  Phillip would be far happier watching me draw a pattern for him to needlepoint or baking cupcakes with him or simply being with him.  For those who are uncomfortable with developmentally delayed people, when it comes to birthdays or holidays, doing nothing appears easier than wondering whether a gift or card would even resonate.

But focusing on what simple acts delight our autistic family members is the kind of holiday gift that money cannot buy.  I have dear friends who make a point of including Phillip in their life because they recognize he is an important part of my life. They mail him postcards regularly from anywhere in the world, even from home, because they know he is thrilled to receive them.   As Edmund Burke said, “Nobody made a greater mistake than he who did nothing because he could only do a little.”  The greatest gestures can also be the smallest.

Holidays nowadays are more likely to resemble high stakes poker games or full impact sporting events or high spending reality shows than simple exchanges of love and friendship. Holidays can be hallmarks of tiny gestures.  In our fast paced and recession-tired current times, holidays prove to be challenging for all families.

Almost every American has grown up with Norman Rockwell’s cheerfully chaotic portraits of large joyful families crowded around a Thanksgiving table.  For many of us, Rockwell’s iconic paintings hold up a beautiful ideal of family life.  As a child, I truly admired Rockwell’s incredibly warm-hearted realistic paintings. As I studied art at UCLA and became an Expressionist painter, I grew to reject Rockwell’s idyllic utopia as sugarcoated and corny.  I’ve come full circle with Rockwell, and now can truly appreciate his extraordinary talent as an illustrator, especially as I now know more about Rockwell’s life.  He grew up in a silent, working class family in New York City, married three times, and struggled with depression.  A telling quote of his was that he painted his happiness but did not live it.  Not that I am trying to celebrate the woes of those who famously appear happy, I merely appreciate knowing that not even Norman Rockwell had the Norman Rockwell fantasy holiday season.

We are all fraught with unfair expectations that every holiday season must be the perfect embodiment of familial bliss. As soon as Halloween is over we brace ourselves for the marketing onslaught in stores and on inundating us with endlessly perfect present suggestions and spectacularly decorated homes, trees and stunning meals. It seems every year the goal gets higher, more expensive and sadly more elusive.  But perhaps we can all jump off the holiday hamster wheel if we simply re-adjust and redefine our values.  Find the gift that isn’t the mall. Look deeper at the act of giving.

For Phillip, the best presents are silent, handmade gestures from the heart.  The best gift I can give my beloved brother is myself; I design the needlepoints he stitches.  Our gift to each other is how we communicate via our creative collaborations.  His endless gift to me is to treasure the present moment. Perhaps determining how best to give of ourselves can be the most rewarding New Year’s Resolution we can make.

LIVE Chat with George Braddock

November 16, 2011 3 comments

Autism Speaks’ Family Services is thrilled to be offering an hour live chat with George Braddock, the President of Creative Housing Solutions LLC.  Please join us on Monday, November 21 at 2:00 p.m. to learn about the work that Mr. Braddock has done to advance community living for adults on autism spectrum.

To join the chat – click here!

George Braddock is President of Creative Housing Solutions LLC. He pioneered the implementation of person-centered planning principles to homes for people with disabilities. George provides environmental engineering services for persons with intellectual and physical disabilities, families, providers and governmental agencies.

George brings to this work an extensive construction background from the field with experience gained from the completion of over 1,500 person-centered projects. He has contributed to the closure of three major state institutions adding significantly to this effort by creating community-based person-centered physical environments that work and make sense for the people who will live and work there. More than 1,000 individuals previously institutionalized now live in community in homes developed, designed and or/constructed by Mr. Braddock.

In addition to developing welcoming and inclusive multi-family housing opportunities for people with ID/DD, George’s work involves developing inclusive, authentic community opportunities for people with disabilities.  Further, he has recently published by the State of New York OPWDD: Making Homes That Work: A Resource Guide for Families Living with Autism Spectrum Disorder and Co-occurring Behaviors.

Rachel Pollack LIVE Chat Transcript

October 19, 2011 Leave a comment

Rachel Pollack, Chief Operating Officer and General Counsel of Job Path, answered questions about employment, in recognition of October as U.S. Department of Labor’s National Disability Employment Awareness month.

Since 1978, Job Path has helped people with developmental disabilities find and excel in mainstream jobs where they work alongside non-disabled colleagues. Job Path graduates work in banks, retail establishments, restaurants and other organizations.

4:02
Hi Everyone, my name is Rachel Pollack, I am the Chief Operating Officer at Job Path, that provides among other things, employment services for people with autism spectrum disabilities. I have been working in the field for over 15 years, am a lawyer, and have a 22-year-old son with autism.
4:03
Comment From Lisarae

My daughter is 19 and will be losing her SSI on Nov. 10th. She has Apergers and will somehow have to make up that money in the job force. Is their hope? Can she do this? She is very high funtioning but just does not understand social ques very well.

4:05
Hi Lisarae – I don’t know why your daughter is losing SSI at 19 so you should consult with whatever legal services are available to see if there is anything you can do about that. YES there is hope you can find a job for your daughter- just be sure you are looking for a job that matches her strengths and interests. We find that when we work with people and match them to their strengths and interests we have very good success and up to 90% retention rate. Each state has state vocational services and providers that can work with you to help you find a job. I understand that the Autism Speaks Family Services page has a link to vocational rehabilitation services. The important thing it to be a consumer and interview those agencies and try to find one that matches your daughter. http://www.autismspeaks.org/family-services/resource-library/adults-autism

4:08
It might be interesting for people to see what we have found works with people with ASD in looking for employment. We are looking for a customized employment approach that relies on a discovery period where employment specialists spend time in the home and community of people with disabilities. Learn about their interests, strengths, and needs then network with employers that has tasks employees can do in that environment.
4:08
Comment From Monique

Have you attempted to get your daugther an extension on her SSI?

4:09
Comment From Guest

We have a 17 yrs old son. He is very easily angered. Do you have any suggestions?

4:12
Hi Guest – If someone gets easily angered, the important thing is to think about what his trigger points are and to be looking for a job that doesn’t create those triggers. To have a job coach who understands what those trigger points are and who will work with him on those trigger points. We have also found that if that person is on the job and they don’t have a job coach there all the time, they can contact their job coach by cell phone when they feel angry. We have arranged with employers to have accommodations with individuals to remove themselves from the job situation when they are feeling under stress or have brief timeouts during the work day. The important thing is to find an environment that can help accommodate those individuals best.
4:12
Comment From Lisarae

@ Guest…A sensory room helped my daughter with anger….and swinging! We built a giante swing that gets her a good 12 feet in the air and she pumps long and hard! LOL

4:13
Comment From Lisarae

How do I retain these services you speak of?

4:16
As I mentioned, most state agencies have provider agencies that provide support and trainer. The important thing to do is perform research to see which agency provides as much individual attention as possible. There are some agencies around the country that are provider customized employment services, a starting place to find that would be to go to the website Marc Gold and Associates which is where we learned this lesson fromhttp://www.marcgold.com
4:17
Comment From Guest

My brother is 40 with aspergers and is currently struggling to find work. Are there job training opportunities available, if so, where do I go to find them. His primary issue is social.

4:18
Currently, I don’t know of any specific job training programs geared to this group of people. The important thing is to encourage your brother to get training in an area that he likes, that he feels comfortable with, and that is going to play on his strengths.
4:19
There are, for younger people around the country, a range of college support programs, some are publicly funded, but many are privately funded. There are some specialized vocational internship programs – most of which are very extensive.
4:23
I always encourage parents, who are looking for an agency to work with them to do extensive interviewing. Often when you go into a state referring agency, they tell you who they think you should work with. You, as an advocate for your family member, should feel comfortable asking questions about the agency and also asking them for other possibilities. You will want to know about supportive employment programs as well as training programs. A training program will provide training in a particular set of skills. A supportive employment program will start with the abilities an employee has to help them find a job and then provide job coaching. You’ll want to choose whichever type of program you think is best for the family member you are trying to help. Don’t be afraid to call up the agency and ask if you can come in and talk with them. Any agency that is going to work well with an individual will be willing to do that. I am always ready to do that and I am very busy!
4:24
Comment From Jessica

I am currently working on my Bachelors Degree in Psychology, through the University of Phoenix. My goal is to work with special needs children, but I would like to keep my options open as to how exactly (teaching, counseling, therapy, etc). I was wondering, to achieve this goal, should I get my Masters Degree in Special Education, or in the Science of Psychology? Thank You for your time.

4:26
Hi Jessica – I think that a Master’s Degree in Special Education is a wonderful degree that you can use in any work that you are going to do with children or adults. Our director of employment services has a Master’s in Special Education that she has been using to provide individual guidance to adults and assistance for vocational rehabilitation. My understanding is that most special education programs have a range of tracks so that you can customize your degree to the kinds of work you think you may be interested in.
4:27
Comment From Lisarae

My daughter has pedantic speach….will a potential employer understand that in the interview process?

4:27
Comment From Lisarae

Does she need paperwork to enter an agency like that or just a diagnosis?

4:27
Comment From Lisarae

My daughter would do well working alone, like stocking shelves at night in a grocery or retail store, I think. Lets just hope those jobs are out there.

4:32
Every state agency is going to require different amounts of paperwork that the chances are the agency will want some type of documentation of a disability, but that will depend on the state agency. Many state agencies will send, if you don’t have the documentation you need, your daughter or son to a psychologist that they will pay for. In terms of the pedantic speech in the interview process, we at Job Path, try to downplay the interview process for the people we work with. A good employment agency will be introducing the employer to your strengths before her interview and will persuade the employer that the interview process is a more a chance to get to know your daughter than a test of her speaking abilities.
To your last question about jobs being available, one of the strengths of customized employment, we aren’t looking at open jobs, rather unmet needs by employers. The idea is to find tasks that aren’t being done by current staff at the busiest hours of the day, or at time of day when other people aren’t available, to to help staff who are overloaded, or to take other tasks other staff are doing that your daughter can do better. You are not looking for job posting as must as you are looking for specific needs of employers that they have not put in a job posting.
4:32
Comment From Michele Vics

I believe I am on the autism spectrum but I haven’t received an official diagnosis. How do I get around that when it comes to job seeking?

4:34
Hi Michele – If you are going to want an accommodation on a job, you are going to want to get an official diagnosis. If you want a referral to a psychologist, most state agencies will send you for an evaluation. In terms of job seeking, if you are having trouble with the interview process, it is very helpful to have an agency involve to help you network.
4:35
Comment From elizabeth

My son is nineteen and was diagnosed with Autism when he was four. We are fortunate to live in Texas where there is help for individuals throughout their school years to recieve help. He is currently going to a school that provide job training until he turns 22. He is not severe and can be quite pleasent to work with at times. During his high school years I worked on my Associates Degree in Criminal Justice and finished my Bachelors Degree in Social Management, I would like to work with children or with families with children of special needs, but am not sure where to begin. I have applyed at a large school district but have not had success getting through with them. What would you suggest? I am open to returning to school again…Sincerely, Elizabeth

4:37
I think it is terrific that you’d like to work in this field and your experience with your son will be invaluable. There are lots of opportunities for working with families of children or adults with special needs in the adult service system. The adult service system needs really, really good people. if you are not having success with your school district, I would suggest that you look for opportunities in the adult system, in your state.
4:37
Comment From Monique

Hi Jessica. I believe an the Masters in Special Eduacation will offer you more options. As long as the degree is a science degree you will be able to teach. So if the Masters in Special Education is a science degree you will be able to teach and work in your career of interest. So to me two is better than one. I just obtained my Masters of Science in Psychology from the University of Phoenix this pass June. Good Luck. Also, make sure you ask your academic counselor which offers you more options so you want be wasting your time.

4:37
Comment From Colleen

My son is 15 years old. Do you have any suggestions for how I can start working with him so he is better prepared for a job?

4:41
Colleen – 15 years-old is the ideal time to start preparing your son for a job. The most important thing is for him to have the expectation that he is going to work. Too often we work with young people who don’t have that assumption. Second, look for all types of volunteer activities in his community where he can gain self-esteem, connect with a range of people and obtain discipline and a work ethic. You might want to refer to the Autism Speaks Family Services Transition Tool Kit which will give you a range of idea http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kitThe most important thing in looking for internships or volunteer opportunity is looking for an environment where he will thrive so he will have success and feel motivated.My son was lucky to have a high school program that provided work experiences throughout his high school years and it was invaluable. Even if his high school doesn’t have that, you can look for that for after school and weekend activities.
4:41
Comment From Nancy

When my son gets a job, how can I make sure that the people he works with know how to work with him so he can succeed? I’m a nervous wreck!

4:44
Nancy, I think it is important if your son feels comfortable, to have him for and an advocate, discuss in advance with the employer how his disability may affect him on the job and what he needs to succeed. When we place someone with ASD on a job, we meet with the employer and staff before with the individuals permission and describe the ways in which the disability may appear and affect the person. Most employers that we work with this information, embrace it, particularly if they know they have a motivated employee who has skills and who will work hard
4:44
Comment From Liz

Our 17 yr old son at about that age took a cooking class at the FFA in our area. He is interested in being a dietician to teach people how to eat right. Also the YMCA has all kinds of programs in all kind of interests. Good luck!

4:45
By FFA are you referring to Future Farmers of America?
4:46
Comment From gail

do people with autism who work usually like to let everyone they work with know about it

4:49
Everybody has a different feeling about that. I would say that most people fall between not wanting anyone and wanting everyone to know. We have worked with some people who don’t want to disclose, but the young people that work with us are comfortable with their diagnosis and can explain it to the people that need to know.I am always touched by how accepting employees and colleagues are when given information to help them understand. A colleagues might be offended when someone interrupts them if they don’t’ know the person has a disability, but will be understanding they know what was behind that interruption. We are working with one young man with Asperger’s who is working full time a t a law firm. He has chosen to let all of his coworkers know about his disability. He gets very anxious at times and the firm allows him to leave the office and walk around when he feels this anxiety. They appreciate that his anxiety is often triggered by the fact there won’t be enough work for him to do. The firm is able to balance the amazing abilities and motivation he brings against the occasional anxiety.
4:50
Comment From Liz

Yes I do mean Future Farmers Of America. He brought home some yummy goodies from the week long summer class.

4:52
I thought it might be helpful to find some of the jobs that some of the people with ASD have found with our agency. We have placed individuals in data entry and clerical jobs, There are individuals doing research jobs. One man is working on the Geek Squad at Best Buy. We have many young people working on stock and retail jobs. We have two individuals working in libraries as page staff. Those are some examples!
4:52
Comment From sarah

i’ve heard about the idea of job coaches in the workplace. who pays for those and what do they do?

4:54
Each state receives a certain about of money from the government which they can supplement with state funding. In New York, job coaches are provided with funding from our state agency. Individuals don’t have to pay for it themselves and employers don’t have to pay for it either. You will have to look into what the funding is for your particular state.
4:55
Job coaches will help people learn a specific task, will help people adjust to a work place, will help gain natural support from the employer and then phase out over time. I think good job coaching is one of the most important things insuring success.
4:55
Comment From elizabeth

Gail, My son is autistic, but I don’t think it even dawns on him to tell anyone he is autistic. Most of the time he will not make eye contact with others, but he is getting better. His comprehension is not his strongest point, and we tend to go in circles alot!

4:56
Even if someone can’t tell an employer that their employer has autism, there may be an advocate that can do that. In those cases, the family can work with a jobs coach staff to inform the employer they have autism
4:59
In this particular economy it is understandable for people to feel discourage in finding employment for someone they care about with a disability. The good news is that we are just as successful in this economy as we have been in booming opportunities to find job placements. The important thing is paying attention to who the individual is and thinking creatively about where they can be an asset. It is very exciting work that we do and employment is making big differences in peoples’ lives.
4:59
For more information about Job Path Employment Programs, you can go to www.jobpathnyc.org and place let us know if you have any questions or if we can help you!

Residential Services and Supports for Adults on the Autism Spectrum

October 17, 2011 11 comments

As Autism Speaks gathers information on residential services and supports for adults on the autism spectrum, we would like to hear from our families on your experiences with housing.  Please share your stories on our blog.

SiriusXM to Broadcast “Doctor Radio Reports: The Future of Autism

September 30, 2011 1 comment

World-Class Experts and Parents Explore the Transition of Children on the Autism Spectrum into Adulthood

September 30, 10:00 am – 12:00 pm ET/Doctor Radio, SiriusXM channel 81

This week on SiriusXM’s Doctor Radio Reports, host/veteran journalist Perri Peltz and a panel of world-class doctors, experts and parents of affected children examine the leading concern of parents with children on the autism spectrum—what happens as the children get older and the parents aren’t there to assist them? Will they be able to get a job, support themselves and find the support they need? In addition, what happens when parents are no longer there to provide care?

Geraldine Dawson, PhD, Chief Science Officer, Autism Speaks, Research Professor in the Department of Psychiatry at the University of North Carolina at Chapel Hill,Peter Bell, Executive Vice President of Programs and Services, Autism Speaks, Lisa Goring, Vice President of Family Services, Autism Speaks, Melissa Nishawala, MD, Medical Director of the Autism Spectrum Disorders Clinical & Research Program at the NYU Child Study Center and Jerry Hulick, Senior Planner with The Washington Group/Mass Mutual’s Special Care Planning Team join Peltz for this two-hour special, offering advice/tips on transitioning teens with autism to adulthood, including:

-       how to find appropriate housing situations for your autistic child

-       how to find support for their medical, psychological and social needs

-       estate planning tips to cover the cost of long-term care

-       establishing trust funds, applying for disability, and assigning guardianship for care and financial security after you’re gone

-       the newest developments in diagnosing and treating autism spectrum disorders

-       the latest in new medications and medication research to treat core autism symptoms as well as associated issues

Listeners are encouraged to call 1-877-NYU-DOCS (I-877-698-3627) or email docs@siriusxm.com with their questions.

Doctor Radio Reports: The Future of Autism will replay October 1 at 6:00 pm and October 2 at 8:00 pm ET.  

In Their Own Words – Hope Found in the Light

September 23, 2011 6 comments

This post is by Tara Washburn, an adult with Asperger’s Syndrome. She says, ‘I was diagnosed with Asperger’s Syndrome at age 28. I have spent the last 5 years coming to understand where I am now and what was happening inside of myself when I was a moderate-low functioning child. This is Autism from my perspective – Autism from the inside out.’ Visit Tara’s Blog, ‘Hearts that Feel‘ for more.

Autistic individuals are often put into a spectrum. This spectrum is an indicator showing how well your loved ones are able to adapt in society. I also have a spectrum, but it has a different meaning.

Everyone is on my spectrum. There are many that are on the low end of your spectrum that are on the highest end of mine. There are many who are successful (according to the world) who use manipulative means to make circumstances suit them. These people are on the low end of my spectrum. My spectrum measures function in lies or truth. It measures from despotic darkness to liberating light.

I do not pretend to be, or comprehend, the light. But I’d like to share my understanding of it and how it relates to individuals that are placed on your spectrum.

The light of truth is blinding when we are not used to seeing it. For example, imagine that you are outside on a dark night and suddenly a brilliant flash of lightning streaks across the sky. Initially you flinch and are filled with both fear and wonderment. So much is determined in that flash of light. Either you cling to the fear of the lightning, so brilliant, powerful and scary, or you cling to the wonderment, so new and somehow enticing.

Likewise, in the end, we either choose the fear that leads to hatred and suffering, or we choose the courage that leads to love and healing. There is no other path, really. All choices ultimately end in either place: we cling to the darkness or we embrace the light.

There are several ways that the world can harm to your loved ones. There are selfish people who take advantage of others, evil people who molest and make afraid, misguided people who unintentionally harm, clumsy and careless people who maim by mistake. Yet, focusing on situations that bring harm, and the individuals responsible, will not bring light to those who are seeking it. It may “take down” one more institution or individual, but it will not stop the abuse, lies, greed and corruption at the heart of the matter. If you fight them using their own weapons, you lose. Period. You cannot experience a victory for light using darkness.

I have often seen homes that cling to fear – the pain and anguish never seem to vanish out of their lives. I have seen homes that embrace truth – the healing and light seem to permeate not only those who live there, but all who enter. When I enter this kind of home I leave feeling as though I am in Heaven for a moment. I have seen other children on the “spectrum” who are likewise affected.

If you truly want to help your child, forgive those whom you feel have wronged your precious one, no matter the motive and reason. Forgive, love and you will see your child light up. The next time he begins to rock and cover his ears, running from darkness, look inside, find light and show him that there is a safe space in you.

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