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December 2013



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Archive for December, 2013


Dear friends,


The last year has been a time of an incredible growth for the Autistic community and the neurodiversity movement. Thanks to you, ASAN and our allies have had an impact on the public conversation on autism in an unprecedented way.


With your support, we’ve deepened our programming in higher education and employment, with initiatives like our Autism Campus Inclusion Summer Leadership Academy preparing the next generation of autistic leaders. Thanks to you, autistic voices are leading the way on critical issues, like health care transition, organ transplant discrimination and implementation of the Affordable Care Act. 


And yet, despite this progress, our community is under attack.


This past week, the Sydney Morning Herald reported that one in twenty parents seeking genetic screening of their embryos at a top Sydney IVF clinic were doing so in hopes of reducing the likelihood of having an autistic child. For years, self-advocates have warned of the resurgence of eugenics de-valuing the lives of autistic people and others with disabilities. Today, we have entered a world in which that risk has become reality.


Workers with disabilities can still legally be paid only pennies an hour. Disability shouldn’t have to mean subpar working conditions and a lifetime of socially-sanctioned poverty–but for hundreds of thousands of worker with disabilities all across the country, it still does. In 2013, Massachusetts and Oregon announced their intent to end this practice in response to pressure from advocacy groups and the Justice Department – but the sheltered workshop industry and their lobbyists are still hard at work trying to stop and rollback our progress.


In 2014, we will be working to combat these and other threats. By advocating for the inclusion, civil rights, self-determination, and full participation of autistic people and fighting back against those who devalue our lives, we can make a difference. But we can’t do it without your help. Help us create a world that is inclusive and supportive of autistic people by making a donation to support our work in the coming year.


If you can, consider making a monthly recurring donation of $25, $50, $100 or another amount that makes sense for your budget. Invest in self-advocate leadership and together, we can build a more inclusive world.


Thank you for your support and for your advocacy. As always, Nothing About Us, Without Us!


Warm regards,
Ari Ne’eman
Autistic Self Advocacy Network

My virtual Christmas tree


Dear Readers,


Wishing you a very Merry Christmas

and a safe and Happy New Year!


Very Best Wishes,





ASAN is thrilled to announce that we have been ranked sixth of all nonprofits advocating for people with disabilities in Philanthropedia’s 2013 national rankings. 


Philanthropedia, a division of GuideStar, serves as an expert resource to identify high-impact nonprofit organizations. The website, myphilanthropedia.com, features rankings based on input from academics, funders, grant makers, policy makers, and consultants. 


The People with Disabilities Report was based on input given by seventy-four top experts, many with disabilities themselves, who were asked to recommend their favorite non-profits supporting people with developmental, physical, and/or mental disabilities through education, research, advocacy, or other direct services. 

Thank you for supporting our policy advocacy and programs that are critical to developing the next generation of leaders in the autistic community advocating for disability rights. Without our leadership, our chapters, our donors, our supporters, and the broader ASAN family, our accomplishments this year and this recognition would not have been possible. 


We are excited for new leadership programs, publications, and policy initiatives coming in 2014, and look forward to building upon our work from this year. If you are interested in supporting our work for the coming year, please consider making a donation.


Donate now!


Today, using the Internet is a key part of getting and keeping many jobs. There are accessibility standards for websites and online tools to make sure that people with physical and/or sensory disabilities can use them. However, the same does not exist for people with intellectual disabilities. As a result, there are barriers preventing people with cognitive disabilities, including autistic people, from finding jobs, performing their jobs well, or advancing in their chosen careers.


The Autistic Self Advocacy Network, in conjunction with the Partnership on Employment and Accessible Technology and the US Department Of Labor’s Office of Disability Employment Policy, invites you to join an online conversation about the internet, cognitive disability, and workers with cognitive disabilities. We are seeking information about problems you may have had when using online tools and websites for job-related activities, and we are also interested in your ideas on how to improve these technology tools. The conversation runs until December 20th.


Participants are encouraged to think about 2 main questions:

  • *How can websites be improved to make it easier to apply for jobs or do work for your job?
  • *What ideas do you have for making online job-related tools easier to use for everyone?


We want to hear from you! Tell us about your experiences using the internet to find and do your job, what barriers you faced, and what solutions you would like to see. We’ll use your answers to develop recommendations for online cognitive accessibility. All ideas are welcome, and joining the conversation is very simple. Just click the link below:


Join the Conversation: Improving the Accessibility of Online Tools for Workers with Intellectual Disabilities

Man on top of mountain with big rock


Dec. 11, 2013 — Researchers at Karolinska Institutet in Sweden have developed a new screening tool to facilitate the diagnosis of Autism Spectrum Disorder in adults. The test is presented in the scientific journal Molecular Autism and is unique in that researchers have, as part of their evaluation, compared the group diagnosed with Autism Spectrum Disorder with psychiatric patients.


Autism Spectrum Disorder is a collective term that embraces autism and Asperger’s Syndrome. The disorder causes major problems in communicating and interacting with other people, and can lead to compulsive routines and interests. In adults, distinguishing Autism Spectrum Disorder from other psychiatric conditions can be a problem, as their symptoms often overlap or are similar to those in schizophrenia, attention deficit and hyperactivity disorder (ADHD) or severe personality disorders.


The screening methods used today for making a correct diagnosis are time-consuming and require considerable expertise. Research specialists at the Department of Clinical Neuroscience have, under the leadership of Dr Susanne Bejerot, refined and simplified an existing American test, RAADS-R (Ritvo Autism and Asperger Diagnostic Scale-Revised). The new test is a questionnaire with 14 self-screening questions. It is therefore known as RAADS-14 Screen. The scale includes three sub-scales that measure mentalisation difficulties, social anxiety and sensory oversensitivity — all common symptoms in autism. The answers are categorised on the basis of whether the symptoms appeared in childhood or developed later in life.


The newly presented evaluation included 135 adults of normal intelligence with Autism Spectrum Disorder and 508 control subjects with some form of psychiatric disorder but not ASD. 590 healthy control subjects were also included in the study. The results showed that it is possible to clearly differentiate the autism spectrum group from patients with ADHD or schizophrenia, for example. The median value in the test for Autism Spectrum Disorder sufferers was 32 points (out of a total of 42), compared with 15 for ADHD patients, 11 for those other psychiatric disorders and 3 for healthy control subjects. By drawing a line at 14 points, 97 percent of the participants with Autism Spectrum Disorder could be identified.


Read in Full:



Today, the Autistic Self Advocacy Network is proud to announce the release of “The Transition to Adulthood for Youth with ID/DD: A review of research, policy and next steps”. This policy brief (found here) analyzes the challenges faced by youth with intellectual and developmental disabilities (I/DD) in moving from pediatric to adult health care systems, accessing specialized health care, obtaining supports, and developing self-advocacy skills.


More than a third of young people in the U.S. who have special health care needs have been diagnosed with a behavioral or developmental disability. All of them face their own sets of challenges and obstacles in their lives. But there is one thing they hold in common — the need for continued support and health care as they transition from adolescence to adulthood. Typically, by the age of 26 young people age out of the medical coverage they may have had as children. In fact, over 75% of uninsured young adults have reported forgoing necessary medical care because of cost.


When children become adults, they start needing to self-direct their care: managing their own health care needs, including making their own doctor’s appointments and managing their own treatments. However, young people with disabilities often have a much greater difficulty with this. It is important that young people with I/DD are taught how to, and encouraged to, take their well-being into their own hands. Lack of access to support with managing health conditions may lead to serious adverse health outcomes, especially for young adults with complex medical needs.


To help combat the issues young people with I/DD face in entering the world of adult health care, our policy brief recommends specific next steps in research, program development and public policy to enable youth with I/DD to get the support and coverage they need. We hope you find it useful. Please feel free to share it broadly with your networks. As always, Nothing About Us, Without Us!


Read more here!

Carol Sonnenblick, Ed.D.

Board of Directors

Freedom Fom Fear

Chubby Santa’s, twinkling lights, parties, the aroma of pies and cookies baking in the kitchen, champagne bubbles, family feasts and gifts piled high greet each year’s holiday season.  Holidays are happy times, right?  Not necessarily.  The advent of the holiday season is not always a time of joy.  It is a time when we mourn those whose presence is missed.  It is a time when frenzied activity adds to the burden of life’s already hectic schedules.  It is a time of excess—spending too much, eating too much and drinking too much. How can we put in the obligatory time with family which may prove toxic as old habits and unresolved issues resurface?   How can we enjoy the holiday season when coping with our usual stressors requires us to use all of our inner resources?  Here are some.


  • *Develop a shopping list and spending plan.  Resist impulse buying and extravagance.
  • *Remember that there is no reason to expect that difficult relationships will have improved since last year—so why get aggravated.
  • *Pace your activities.  Accept invitations to those events that will not overburden your life and cause next day exhaustion.  Feeling tired and frantic is not good for your physical and mental health.
  • *If food and drink are an issue—try moderation (more easily said than done—think  January when you will want to undo the results of binge indulging)
  • *Choose parties and events you really care about, avoid day after day of obligatory activities. 
  • *Set aside some time just for yourself—do something that you enjoy, makes you smile and reduces your sense of being on a treadmill.
  • *Chose someone you really care about and spend some quality time, even if it’s only a quick lunch somewhere. 
  • *Make plans for January and February to do something special—give yourself something to look forward to during the coldest, darkest winter months.
  • *Buy yourself a gift, something that you really want that no one else is going to get for you. 

Put the holiday into perspective—the excitement, the scenery, the parties, friends and family.  Recognize that changes in routine can be stressful but that’s just part of the season—enjoy and happy holidays.   

“Remember that our expectations will create our reactions, and expectations are often too idealistic if guided by the hallmark holiday image.”   -Mark Sisti, Ph.D

“Have the freedom to change traditions, based on what works and what no longer works.”-Constance Salhany, Ph.D.

Source:  http://www.freedomfromfear.org/viewtopic.asp?topic_id=246

Christmas and ASD

Christmas  can  be  an  exciting  and  fun  time,  but  it  can  also  be  stressful.
People  with  an  autistic  spectrum  disorder  (ASD)  may  be  confused  or
distressed  by  all  the  new  activity  within  the  household  at  Christmas  and
this can be upsetting for the rest of the family. Hopefully this information

sheet will provide some tips which might help. The word ‘child’ will be used throughout however some of the tips will be useful for adults too.



As Christmas approaches, you may want to highlight this holiday period on the household’s or child’s calendar. We would suggest that you check when the school starts work about Christmas, and perhaps you could introduce the idea at a similar time. This will help to ensure consistency. However, if this time frame does not leave enough preparation time for your child, then you should adjust it as appropriate.


You may only want to emphasise Christmas Day on the calendar. Or you might want to indicate when the school term ends and starts again, to show that the child will be at home during this holiday. You could name this period on the calendar: ‘Christmas Time’ might be appropriate. Highlighting this on the calendar will help your child to prepare for the time spent away from school, and therefore the change in routine. You can start talking to your child about ‘Christmas Time’ and what this means. This will differ for each family. You could produce a booklet on Christmas with pictures of relevant items, for example Christmas trees, the sorts of decorations you use and the food you might eat. However, remember that if your child is very literal you will need to be careful as they may become anxious if your Christmas does not appear exactly as the pictures.


On your calendar you can mark the days that you will buy and put up the Christmas tree and decorations, as well as any other changes which will occur. Do not forget to include the day when relatives or friends will arrive to stay. Although a lot can change during this time, it is important to continue your child’s routine to some extent. If you use visual timetables with your child (see our ‘Visual supports’ information sheet, available free from the Autism Helpline), continue to use them to show what they will be doing during this period.


You should include your child with an ASD in the Christmas process. You may want to take them shopping for the tree and decorations, or show them where they are kept in the house before you bring them out for the holiday. This will help your child to become familiar with these items, even if they saw them the year before. Your child should also be involved in putting up the decorations, even if they are just in the room when it occurs. This will hopefully prevent any negative reactions to these new items being placed in a familiar environment.


If your child does want to be included then you may like to give them a particular job to do which they can focus on. This may help them to feel included and less anxious about the changes around them. You may even want to decorate the house over a few days if your child finds change particularly difficult. For example, you could place the tree in position, leave it for a few days and then start to decorate it, adding any house decorations later on.


The Autism Helpline is often asked about suitable toys or gifts for a child with an ASD. These will vary from one person to another. However we would suggest that for some children with an ASD having a huge number of presents from friends and family might be too overwhelming. Perhaps a set amount could be given, maybe one from mum and dad and one from grandparents. Any other family members who would like to buy a gift could perhaps put the money in a trust fund to be used for the child at other times. Alternatively, perhaps giving the child one gift a day might help to reduce any anxiety.

Suitable gifts

The Autism Helpline is often asked what toys might be suitable for children with an ASD. Therefore we have compiled a list (in no particular order):

1) Trampolines
These come in lots of different sizes, but make sure it’s strong. They are good for using up energy.


2) Sensory toys
There are many types of these, some examples are:

  • *bubble tubes/columns, all different sizes and colours
  • *fibre optic plumes that change colour and can be safely brushed with the hand
  • *bubble-making machines.

3) Board games

  • *’The Socially Speaking Game’ is a social skills board game for seven-year-olds+ from LDAlearning (www.ldalearning.com)
  • *Battleships/Guess Who? are both turn-taking games.

4) Music

  • *on tape or CD
  • *instruments.

5) Bikes/tricycles

6) Water toys

7) Books
Read-along ones, perhaps accompanied by a tape of the story; for example The Hungry Caterpillar.

These are just a few examples, there are many more. Please remember that every child is different so not every child will like the same toys.

The following website also has some advice about choosing toys for children with autism: www.insidethebubble.co.uk/toys.php

If your child is becoming obsessive about Christmas, you will need to try and set boundaries around this obsession. Please see the Obsessions, repetitive behaviours and routines information sheet for further information.
If you would like any of the information sheets mentioned in this article (Visual supports; Obsessions, repetitive behaviours and routines) please contact the Autism Helpline 0845 070 4004.

Useful contacts

Garden Adventure
Trampolines of all sizes and shapes
Tel: 01342 300146
Email: info@gardenadventure.co.uk
Website: www.gardenadventure.co.uk/Trampoline/index.php

A charity which helps parents and carers of a child with special needs of any kind to find simple, affordable solutions to practical problems.
Sells toys, trikes and other products for children with disabilities
Tel: 0845 458 1124
Email: enquiries@fledglings.org.uk
Website: www.fledglings.org.uk

National charity providing fun to children with special needs, including play equipment and grants
Tel: 01525 385 232
Email: kidsout@kidsout.org.uk
Website: www.kidsout.org.uk

Special Needs Kids
Some ideas for special needs toys
Email: enquiries@special-needs-kids.co.uk
Website: www.special-needs-kids.co.uk/toys-index.htm

Resource catalogue
Tel: 0845 120 4776
Website: www.ldalearning.com

National Association of Toy and Leisure Libraries
Tel London office: 020 7255 4600
Tel Scotland office: 0131 664 2746
Tel Wales office: 02920 566 333
Website: www.natll.org.uk

Rompathe 6th sense
Resource catalogue
Tel: 01246 211777
Email: sales@rompa.com
Website: www.rompa.com  

SenseToys Ltd
Tel: 0845 257 0849
Email: info@sensetoys.com
Website: www.sensetoys.com

SpaceKraft Limited
Resource catalogue
Tel: 01274 581 007
Website: www.spacekraft.co.uk

Resource catalogue
Tel: 01299 827 820
Email: enquiry form on the website
Website: http://www.specialneedstoys.com/UK/  

Winslow Resources
Resource catalogue
Tel: 0845 230 2777
Email: sales@winslow-cat.com
Website: www.winslow-cat.com

Please note the above organisations are not connected with The National Autistic Society in any way; we cannot recommend any of the above organisations.

References/recommended reading

Newson, J. and E. (1982). Top twenty toys for handicapped children in Living and working with autism. Section 5. The National Autistic Society.
This article is a little old-fashioned in its use of language. However many of their recommendations will still be applicable today. Copies are available from the Autism Helpline on 0845 070 4004.

If you require further information about autism and related issues, please contact the NAS Autism Helpline, open Monday-Friday, 10am-4pm:

Tel: 0845 070 4004
Email: autismhelpline@nas.org.uk

Source:    http://www.autismjersey.org/   

Further Articles

NAS:  Ten Ideas For A Happy Christmas


Grieving: 7 Tips To Get You Through The Holidays


Holiday Pieces: Getting Through The Holidays, Family Ties, Doing Right For Others & Holiday Blues:


Holiday Shopping Tips, Christmas Stress Management, Why Holidays Don’t Have To Be ‘Happy’:


NAS: ‘Tis the Season to be Jolly:


Introverts: Party Survival Tactics, The Party Predicament, Introverts & Health:


LEGO NAS Charity Calendar 2010 & New LEGO Games:


Sensory Toy Warehouse(Please Note Comment For Name/Site Change):


Introvert’s Guide to Holiday Merriment:


Managing Holiday Stress, Alone For The Holidays, Families In Recovery:



The Autistic Self Advocacy Network is looking for a full-time Leadership Programs Coordinator. The Leadership Programs Coordinator will play an integral role on ASAN’s community engagement team and will work closely with ASAN leadership to plan and coordinate ASAN’s leadership trainings, support the participants and alumni in their skill development and activism following the trainings, and coordinate national self-advocacy efforts in conjunction with the Director of Programs and other ASAN staff.


This job is a salaried position based out of ASAN’s Washington, DC office. To learn more, please view the job listing on our website.


Prior experience with grassroots organizing, event planning and coordination is strongly preferred. We strongly encourage applicants with disabilities to apply.


Interested parties should send their resume, cover letter, and 2 references to jbascom@autisticadvocacy.org.

Tones - Art and Music Interviews



Tuesday, November 26th 2013


Sony Pictures, Warner Bros., Film Roman, DreamWorks, Titmouse, and others lend their expertise as part of Exceptional Minds’ three-year digital arts program taught by movie industry professionals and adapted for the special needs of individuals with autism.

Exceptional Minds digital arts vocational school for young adults with autism has been making the Hollywood rounds these past few weeks in order to help prepare its first graduating class for careers in the highly competitive fields of digital animation and post-production.


Executives from Sony Pictures Imageworks and Warner Bros. Animation recently visited the school as guest lecturers, as did key animators as well as a recruiter from Film Roman animation studio. Exceptional Minds students – all on the spectrum and preparing for careers in the digital arts — also met with staff and crew at DreamWorks Animation, Film Roman, Sony Pictures Imageworks, Titmouse Animation, and Big Screen Network Production in the past two months. In addition to lecture speakers and studio tours, four Exceptional Minds graduating students and an instructor recently worked on visual effects for upcoming blockbuster movie American Hustle, earning them screen credit for their contribution to the film.


This recent activity is all part of Exceptional Minds’ three-year digital arts program taught by movie industry professionals and adapted for the special needs of individuals with autism. “We have reached the point in our program where our students have met most of their program certification requirements and are now continuing their education outside the classroom. When we called on the industry to give of their time, we were overwhelmed by the response and the genuine interest in our students,” said Susan Zwerman, one of the co-founders of Exceptional Minds who is also an established visual effects producer and recipient of the 2013 Frank Capra Achievement award.


Read More …




Posted on: 11:17 am, November 29, 2013, by


(Santa Monica, CBS) The most surprising thing about Max Parker’s morning routine is that he has a job to go to — at all.


He didn’t know a whole lot about it when he got into it.


“It was pretty much all new stuff,” he says.


But now, he seems to be excelling at it.


Parker is a software analyst. He’s also autistic.


Parker says that when he was growing up, he never envisioned having a job like this.


Roughly 75 percent of autistic adults are unemployed, in part because the brain disorder makes it difficult to interact with others.


But many on the autism spectrum also have an uncanny ability to focus intensely on minute details — perfect for the tedious work of hunting for glitches in computer software.


“This is not a charity,” says Chad Hahn, the CEO of MindSpark. “And our employees are good at what they do.”


Hahn, a software designer, used to outsource work to India, but his wife, a social worker, convinced him “high-functioning” autistic adults, like Parker, are well suited for the job.


“If you and I look at a set of instructions over and over again, I don’t know about you, but I would miss some things,” Hahn says. “Max doesn’t miss things. He’s really good at it.”


“Finding jobs for people with autism that focus on technical skills, on concentration, on detail, is exactly the right thing to do,” says Dr. Marcel Just, who studies autism at Carnegie Mellon University.


Just says his research has found autistic brains are wired differently. Most people rely on the front of the brain to process the “big picture” around us. But with autism, it’s the opposite: thinking is dominated by parts of the brain that handle details.


“People with autism can zoom in on detail, with technical knowledge, with expertise, and zoom in, not be bothered by the larger picture and maybe find details that are wrong,” Just says.


Read in Full: