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Posts Tagged ‘Transition Tool Kit’

Social Lives and Teens with Autism

January 24, 2012 27 comments

This is a blog post by Lisa Goring, Autism Speaks Vice President, Family Services.

A recent research study funded by Autism Speaks reached a conclusion that probably would surprise few in our community: Teens with an autism spectrum disorder (ASD) often face major obstacles to social life outside the classroom. Given that one of the hallmark features of autism is impaired social interaction, it’s not hard to imagine why teens on the spectrum typically have difficulty making friends and participating in social activities, especially outside of school.

Unfortunately, social challenges are often considered the norm for kids growing up with autism. But this needs to change. The good news is that change is underway. Innovative approaches – ranging from group golf lessons to Girls Night Out – have been launched across the United States with the support of Family Services Community Grants from Autism Speaks. Their goal is to improve the socialization skills of teens and young adults with autism.

The research study was originally funded by Autism Speaks as a Pilot Grant in 2010 and then published in the November 2011 issue of PLoS One by a team led by Paul T. Shattuck, Ph.D., of Washington University, in St. Louis. The study analyzed data collected from a large number of adolescent students with autism enrolled in special education.

When compared to students with other special education needs, such as learning disabilities, mental retardation* and speech-language impairment, teens on the spectrum are significantly less likely to see friends out of school (43.3 percent), never to get called by friends (54.4 percent) and never to be invited to social activities (50.4 percent).

Empirical data such as the information from this study helps drive awareness and decision making. Based on these results, we now know with more certainty that many adolescents with ASD struggle to fit in with their peers. Backed with facts and figures, we can advocate for additional services and supports, target our research toward social skills interventions, develop better policies, and, ultimately, create more and better services and programs.

In this case, the research reaffirms the need for initiatives such as the Family Services Community Grant program that Autism Speaks created five years ago with two goals in mind: 1) to build the field of services for individuals with autism and 2) to expand the capacity to effectively serve this growing community. In addition, a Transition Tool Kit was created and launched last year to help guide the transition from adolescence to adulthood. Both cases demonstrate how Autism Speaks is providing solutions to help families address real challenges identified or documented through research.

The Community Grants [JSS1] are designed to meet needs in education, recreation and community activities, and specifically [JSS2] young adult and adult programs. Among the elements that go into a successful proposal are innovation and the ability to be replicated elsewhere.

To date, Autism Speaks has funded 193 community grants totaling almost $4.0 million across North America. A sampling of recent grant awards demonstrates how community initiatives across the country are addressing the need for social activities targeted to teens and young adults. Here are a few examples:

  • Several suburban school districts outside of Philadelphia banded together to organize “Acting Antics,” a program using live theater as a way to teach social cognition skills. Student actors perform in short scenes with a partner, each assuming the persona of a particular character. The exercise requires each student to consider the character’s perspective, creating an opportunity to teach this skill in a fun and non-threatening manner. The Autism Speaks grant will be used to expand the program to other school districts.
  • In Kansas City, a Girls Night Out program was established through the University of Kansas to build social competence and self-care skills for teen girls on the autism spectrum. The sessions take place in community settings such as a hair salon, coffee shop and gym. The community grant from Autism Speaks will be used to provide opportunities for girls with ASD to interact with typically developing peers during age-appropriate activities while improving social competence, friendship development, social skills and improved self-care skills.
  • Golf was the theme of “Far from Par,” a summer golf program for 16 middle and high school students in Bergenfield, N.J., that set out to improve communication, social and physical skills, and help the students forge closer bonds with peers, siblings and parents. The Family Services grant enabled the program to double attendance.
  • The Outdoors for All Foundation, in Seattle, was awarded a grant to expand its outdoor recreation program for children and adults living with ASD and their friends and families. The foundation was also able to design a week-long adventure camp for teens with high functioning autism as a result of their grant.

Our research funding will continue to help us target our family service grants toward specific areas of need and also allow for the development of new and more effective autism services.  We will continue to make use of those research findings to develop and expand new programs is equally important to improve the quality of life of teens and young adults on the spectrum. Autism Speaks would like to thank its supporters for helping us fund our science and family services grant programs.

*Although current consensus in the field eschews us of the term “mental retardation” in favor of “intellectual disability”, the study authors used the mental retardation term “to be consistent with the special education legislative definitions of the various disability categories and the way the survey data were collected.”


 

In Their Own Words – Despite the System

December 6, 2011 10 comments

This is a blog post by Barbara MacArthur. She was diagnosed on the autism spectrum in her mid seventies and her son Howard also has autism.

My husband and I split up before our son was born.  He left the city and I had no idea of his whereabouts.  He had given up his job and later I found he had left behind a lot of debts which were nothing to do with me, but being a muggins I managed to repay them as I continued to work until a couple of weeks before the birth. I did not tell anyone that I was pregnant as I was lucky it did not show and I was afraid of losing my job.  (I had to leave a couple of weeks before the birth, as there were no special arrangements in those days).

We heard no more from Derek until one day, having taken Howard out in his pram; he pulled up in his car. I thought he wanted to look at the baby, but instead he asked me to the movies. It was the last thing I wanted to do. I said no, and he went, and that was the last I saw of him. At the time these events felt tragic, but now Howard, who is 57 and still living with me, and I smile at this. I thought Derek was strong and dominant. I thought I was weak and feminine. I see now that I did not know who I was then, and that I was the strong one.

When he was a child, Howard, was diagnosed as profoundly autistic and asthmatic.  “Just one of those things,” the doctors said. One told me he was “a write-off.” Another advised, “Stop sacrificing yourself, put him in an institution and forget him,” but having Howard adopted was an option I never considered. It seemed such a ridiculous suggestion, and I was sure I could work to support us.

I always had to work, there was no choice.  My husband never supported us and I did not know where he was. Howard was a bonny baby and weighed 28 lbs when he was 6 months old. Social security money would have been insufficient to keep him.  He always had a large appetite and his extra-large size clothes were expensive.  In 1973 my son received an official letter to say my ex-husband had died inManchester.  He had never remarried so my son was his only relative, but nothing was left except just enough to pay the burial expenses.  It was very sad because he was well educated and handsome, and had served as an officer in the Royal Artillery during the war.  Unfortunately, no widowed mother’s allowance, because I had divorced him in his absence (by newspaper advertisement) to make sure I could keep my job – married women were always the first to be made redundant.

In those days there was no allowance for one child or for a handicapped child or lone parent. I had to smile when I was refused a mortgage because my husband’s signature was needed in those days, even though he had left his job, I still had no idea where he was and I was in full-time employment.  I managed to get enough cash to buy a very old house with a dodgy roof, no bathroom and an outside toilet. It was cheap because of its condition, but it was all I could afford, and it took me ages to clean it up, get rid of the cockroaches, beetles and mice.  Somehow I managed to carry out some essential repairs myself until, over the years I saved enough to pay professionals for proper improvements and repairs.

Once, when my son was very small, I did give in to pride when I was on my uppers and applied for help from a charitable organization which had been set up to give financial and other support to unmarried mothers.  They had extended their remit and had given regular financial help to widows, widowers and single dads.  I felt so embarrassed when they turned me down flat in such an unpleasant way telling me in no uncertain terms that my it was my husband’s duty to support my child and me – as if I did not know that already!   Unfortunately, the phrase “Tell me about it!” had not yet been coined. Life is so funny – thank goodness I could see the funny side of it.

The stigma of being a divorcee with a child with learning difficulties was very strong, and we were regarded as less than second-class citizens.  Because of his hyperactivity, screams and tantrums, people thought he was a naughty child with a bad mother. In supermarkets he would go behind the counters and switch any switches on or off, or pull trays of goods to the floor. Could you blame the staff for threatening to ban us? When I took him to the beach he had to be watched all the time.  He had a habit of plonking himself on girls’ tummies when they were sunbathing. And if the bus home ever deviated from the usual route he would try to jump off while the conductor and passengers would remark: “Why don’t you control that effing boy! Women like you shouldn’t be allowed to have children. You should be sterilized.” Even doctors did not seem to understand autism and no facilities or support was available. I came to believe that what people said must be true; sometimes I used to feel that people were stepping all over me with heavy boots, and that I was beaten down into the pavement.

I am proud of my son for what he has achieved.  He will always be autistic and be considered by many as being ‘eccentric’ or a ‘bit odd’, but he is popular and has a tremendous sense of humour.  He is great company, enjoys his hobbies and is kind and affectionate. He is an extremely happy person.

A few years ago my son, Howard, and I signed on for part-time computer courses because we were both computer illiterate.  A Disability Officer at the Jobcentre referred him to the classes and I joined too, partly because I felt my son needed a ‘helper’ to cope with his learning difficulties.   I need not have worried.  We both became hooked on computers and ended up by both signing on for a full-time course at a local College in 1998.  My son became so proficient that the tutors nicknamed him ‘cyber-junkie’ and the name has stuck.  We both lost education in our youth – me at the age of just 14 because my school was destroyed by explosive incendiaries during World War Two – my son because he was refused admission to any school until he was 10 years old because he could not speak until then.  As the local Education Department put it in their letter to me “the medical officer and the educational psychologist have decided that Howard has such a disability of mind as to make him incapable of receiving education”

We completed the second year of full-time studies at college.    An assignment Howard chose to complete was about shopping on the Internet (5,000-plus words plus illustrations) and he named it ‘Window(s) Shopping’.  Despite his slight speech impediment he gave a great 20-minute presentation of the subject in front of class and tutors. It was very enjoyable for everyone.  I chose to compose an assignment about elderly people surfing the Internet and I called it ‘Cyber-Wrinklies’.

I used to be a full-time carer for three people – my elderly parents and my son.  My parents gave up their Council flat in Llanrumney and lived with my son and me for 16 years when we cared for them.  In July 1982 I was lucky enough to be able to take early retirement, as it really had become a 24-hour a day job at home. Some years ago my parents died within a month of each other – both in their 90s, in our home, leaving just enough money to cover cremation expenses. They had dreaded the thought of going to a nursing-home, they went suddenly and without pain, first my father with a heart attack and then my mother with a massive stroke.

My son and I were both thrilled to gain our Computer Science qualifications and continued our studies.  Howard graduated from University in 2003 – Computer Science. We are both very happy and have made lots of friends through our IT interests. Our life was transformed. We owe a lot to the tutors and staff at college and University and those who have set up these educational schemes.

Howard and I complement each other in that we have similar interests — computers and bookshops, for instance — yet we go in different directions. Howard loves downloading train simulators from different countries of the world on to his virtual railways. He has become hooked on music from YouTube. Howard loves Enya. I like downloading photos of tropical blue seas, palm trees and beaches. I like looking at different websites and what is going on in the world, especiallyUSpolitics. Howard is wary of the telephone, young children, noise, dogs, yet we both love heavy metal (noise) like ‘Queensof the Stone Age’, ‘Rammstein’ and Dave Grohl. Howard used to tease me because I loved all Leonard Cohen CDs, but later he became hooked too.

We are both loners – I suppose that is the autism in us.  It was not until my father was quite old that it dawned on me that he always had the classic symptoms of autism.  He had no formal education and joined the Royal Navy at the outbreak of the Great War (WW1) when he was just 16; he was well read and considered very clever, but extremely eccentric. When I thought back to my childhood I realized that I was ‘different’ but I was not diagnosed as somewhere within the autistic syndrome until I was in my mid-70s.

Now I am 85 and still Howard’s only carer, though he needs guidance more than care these days. I tell people that as I get older and less strong physically, we “prop each other up”, but that is partly to raise Howard’s self-esteem. He likes to consider himself my “nurturer”, a word he found on the web. I joke sometimes about pensioners who say they are lonely; I wish I had the chance to be lonely. I enjoy time on my own, always go to bed late and sometimes get up in the early hours and, if I am lucky, watch a late-night film drama. Tonight as I write he is in bed and I have just put out the rubbish bags. He helped earlier by emptying waste-paper baskets around the house, so it is team work. But he is often in his own world in his mind.

We lead a happy life. Coming back from town this morning we were dodging the traffic and continually laughing for no particular reason. But I worry what will happen to Howard when I die. My ex-husband died of cancer inManchester (this we learned by letter in 1973). We have our own home and Howard would want to remain here. There must be many carers in similar circumstances throughout the world who lay awake at night wondering what will happen when they are gone. Howard loves his home and is happy here; it would break his heart to be moved.

We were very lucky as we survived DESPITE the system – not because of it.  I hope eventually all of you will be lucky too.

Family Services Office Hours – 11.30.11

December 1, 2011 2 comments
3:02
Hello everyone and welcome to this week’s Office Hours!
3:03
The Autism Response Team is here and ready to answer your questions and provide you with some great resources!
3:08
Submit A Service
Do you have a service you’d like to add to the Autism Speaks Resource Guide? Click here to complete the submission form!
http://www.autismspeaks.org/family-services/resource-guide
3:09
Comment From Bridget

My granddaughter who I raise has P.D.D. N.O S. she screams alot and has started to throw things and kick. Her schedual has be out of wack this week is a strong schedual important for her behavior problems?

3:11
Hello Bridget
YES!! Many children with autism depend on a routine schedule that is predictable. but its also important to mix and vary activities in order for the person to get used to variety of activities.
3:12
Also Bridget – we have recently published a grandparent tool kit
3:12
Comment From Heidi

Hello, my son is high functioning ASD and wiil be getting an iPad soon. I have been looking at various blogs, articles and sites for apps that he can use but was wondering if you have any recommendations? Looking mostly for eye contact, social, and speech. Thanks!

3:12
Hi Heidi! We have a great list of Apps for Autism in our Resource Library. These are apps that have been submitted to us by families or professionals who have found them very helpful! In addition, at the bottom of the page, there are links to many other lists of app recommendations from other autism organizations.http://www.autismspeaks.org/family-services/resource-library/autism-apps
3:13
Comment From amber

my son is 13 and high functioning but still cannot tie his shoes or place on right feet

3:17
Hi Amber – Your son is right at the start of the Transition age- and you are absolutely right to make sure he can complete his self care and dressing himself independently. I would suggest making “shoe tying” a objective in your son’s IEP. There are many different instructional methods to teach these self care skills, it will be important to determine the best one to teach your son.
3:17
Amber- In addition we have have recently published a Transition Tool kit.
3:18
Comment From Bobbie

I am not a parent but I am a psychology major. I am planning to complete my ABA certification in the next two years. I am currently working with Autistic children and their families through local groups and organizations. Are there any “good” or “proven” resource sites/books that you recommend that I use in order to gain information and useful methods for working with these individuals.

3:18
Hi Bobbie. That is great to hear you are working with children with autism. We need more people like you! We do not endorse any very specific resources, however we have lists of books and tools for professionals on our website that people have submitted to us because they have found them helpful in working with children with autism. You can check out these books/tools at the 2 links below: http://www.autismspeaks.org/family-services/resource-library/books#professionalshttp://www.autismspeaks.org/family-services/resource-library/tools-professionals
3:18
Comment From Jennifer S

First off. Thank you for taking the time to help!! Heres my question. My 4 year old son has autism. We are having a really hard time potty training. He will use the potty but ONLY IF he has on NO clothes at all. If he has any article of clothing on he will use the bathroom on himself. We tried going potty every 15 mins, but that still doesn’t help. My husband and I are just out of ideas and really don’t know where to turn to for help..

3:23
Hi Jennifer- Hang in there, all your time and effort will be worthwhile when your child is successfully potty trained! I would suggest you consult with your Pediatrician and your son’s school based team. This is a skill where you need to work with the classroom teacher, to make sure you are both on the same page.
Also, the Autism Treatment Network (ATN) will be publishing a Tool Kit in early 2012 on Potty Training for Individuals with Autism. Check back on their webpage early 2012.
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use
3:23
We do not endorse any specific materials, but here are 2 books that have been submitted to our Resource Library from families who have found them to be helpful with toilet training: http://www.amazon.com/teach-toileting-revolutionary-approach-disorders/dp/0615255523http://www.amazon.com/gp/product/1932565493/ref=as_li_ss_tl?ie=UTF8&tag=autispea-20&linkCode=as2&camp=217145&creative=399369&creativeASIN=1932565493
3:24
Comment From Susan

My daughter takes Vyvanse and Celexa for the past year. I do think they help her but how long is it safe or recommended to remain medicated?

3:24
Hi Susan. Every child is different and every child responds differently to different medications. Our Autism Treatment Network team just released a Medication Decision Aid Tool Kit called Autism – Should My Child Be Taking Medication for Challenging Behavior?. We have gotten great feedback from this resource, as many of families in the Autism Speaks community have found it to be very helpful!
3:25
Comment From Mary

I have a 12 yo aspergers boy. Yesterday was written up for saying a curse at 13 yo girls who were bothering him – the problem is his perception of the situation – he felt attacked. He wasn’t really wrong (per his teacher) but I do need to disapline for the language. I am running out of disaplinary actions (have restricted everything – nothing makes an impact). What can be utilized to get the message across, and help him to have a better perception of situations?

3:27
Hi Mary- As you know, there is no easy answer to your question. Does your son have support in developing appropriate social skills? I would ask to include a social skill goal in his IEP so that it can be addressed and his progress documented.
3:28
In addition, I would suggest 2 tool kits we have: our Asperger Syndrome/High-Functioning Tool Kithttp://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:28
and our Transition Tool Kit for children with autism transitioning to adulthood: http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
3:30
Comment From Cassie

My son is 19, HF, and rather obsessed with our football team’s win-loss record. we’ve had 0-11, 0-10. gets mighty upset about it. Is there anything I can do besides redirect? Concerned because next year he’ll be living away from home, need to help him do it himself.

3:33
HI Cassie – Does your son have a counselor or a support person he can discuss these kinds of issues on an ongoing basis. It might be a good idea if he is planning a transition to have someone to talk with about his these upcoming changes.
3:33
Here is a link to our Transition Tool Kit. You can order a copy free of charge on our website: http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
3:34
Comment From Guest

Hi. Do you have any guidance addressing problem behaviors (ex. hitting, punching, pinching, screaming) in preschool/early school years?

3:37
Hi- I would request an IEP, and ask his Team to address these problem behaviors. It very important to understand the functions of the behaviors and have a detailed plan in place that everyone on the team is in agreement with. Its also important to track the data to make sure the plan is working.
3:37
Here is a link to information about Applied Behavior Analysis from our website: http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba There is also a list of other treatments on the left side panel as well.
3:38
If you are looking for resources in your area, we have a list of ABA and other service providers, as well as social skills groups and afterschool programs, in our Resource Guide:www.autismspeaks.org/resource-guide
3:39
We also have a list of books related to teaching increasing social skills and decreasing challenging behavior on the Books page of our Resource Library: http://www.autismspeaks.org/family-services/resource-library/books#socia
3:40
We hope these resources are helpful to you!
3:40
Comment From Guest

my daughter is 7 and has PDD-NOS and tends to repeat phrases a lot. Is there anything that we can do to stop this?

3:42
Hello Guest- I would recommend you request a Speech and Language evaluation, in order to gain a full understanding of your daughter’s echolalia, and a plan to implement. You can locate a Speech and Language professional in our online Resource Guide.
http://www.autismspeaks.org/family-services/resource-guide
3:43
You may also want to include speech therapy in your daughter’s IEP. You can read more about IEP’s and how to get what you and your child need most with them athttp://www.autismspeaks.org/family-services/community-connections/back-to-school
3:44
Comment From debbie

how do I tell if my 15 year old who is failing school by not doing homework and studying is really struggling or is being lazy? I have done everything I can think I can to monitor his grades and homework and he always says he is done.

3:49
HI Debbie- Its sounds like you’ve been working very hard to help your son. I would suggest you get some support by calling an IEP or working together with this teachers. Its important that counselors, teachers, etc., be part of the plan One suggestions might be that he complete his homework at school after school hours. I am including a link to the transition Guide, as a parent you can get a free copy mailed to you.
3:51
Comment From Guest

Hello everyone, my son is 10yrs. HFA . I have not have the talk with him yet of him having autism…how should I start what should i do,,I am afraid of what reaction he might have.

3:52
Hello-IAN – Interactive Autism Network has some great article on Telling Your Child About Autism.http://www.iancommunity.org/cs/articles/telling_a_child_about_his_asd
3:53
In addition we have lots more information about AS/HFA including a section on AS/HFA and your Family in our tool kit:http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:55
Comment From Rechelle

What is a successful way to discipline a child w/Aspergers and HFA? I am not a spanker.

3:58
Dr Tony Attwood, author and therapist, is an expert on this subject–
How do you discipline a child with Asperger’s Syndrome?
http://www.autismsupportnetwork.com/news/how-do-you-discipline-child-aspergers-syndrome-autism-203392344
3:59
Comment From Guest

Any suggestons as to how to explain to my 6yr old that my 4 yr old has autism and he really cant help some of his behaviors. Im just not sure how to start that “talk”.

3:59
Hi Guest. You can read more about disclosing autism to your child and other family members at our IAN site: Telling Your Child. It has a section on telling siblings.http://www.iancommunity.org/cs/articles/telling_a_child_about_his_asd. We have also recently launched a Siblings Tool Kit (in addition to a Parent, Grandparent and Friend Tool Kit) for children ages 6-12 that helps families explain autism to their siblings. You can download the kit for free and view other resources at:http://www.autismspeaks.org/family-services/family-support-tool-kits#siblings. We also have a list of Books for Siblings athttp://www.autismspeaks.org/family-services/resource-library/books#siblings
4:00
Thank you all for joining our Office Hours chat today! If we have not been able to answer your questions, please feel free to call us at 888-AUTISM2 or email us atfamilyservicse@autismspeaks.org.
4:00
We are always happy to help!
4:00
See you next week!

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!

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.

LIVE Chat with Rachel Pollack of Job Path

October 14, 2011 4 comments

Please join us on Tuesday, October 18  at 4 p.m. (EST) for a live chat with Rachel Pollack, Chief Operating Officer and General Counsel of  Job Path  as she answers 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 including: Barnes & Noble, Bed Bath & Beyond, Modell’s Sporting Goods, Office Depot, ShopRite, Stanley M. Isaacs Neighborhood Center, T.J.Maxx, Trader Joe’s, Walgreens and Willner Chemists.  Job Path has also worked with law firms such as Paul Weiss, Rifkind,Wharton & Garrison; Cleary Gottlieb; Skadden, Arps, Slate, Meagher & Flom & Affiliates, LLP; and Cahill Gordon & White. Our employment programs are designed to help anyone who wants to work, no matter the amount of support he or she might need.

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