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ACTION ALERT: Speak Out Against Chemical Restraint


Last Friday, the New York Times ran an expose documenting the systemic overuse of psychotropic medication by New York’s residential service-provision system for people with intellectual and developmental disabilities. According to the Times, people with developmental disabilities in group homes in New York are more likely to be given Ativan, an anti-anxiety drug that also serves as a tranquilizer, than multivitamins. In many cases, psychotropic medication is prescribed as a chemical restraint to control behavior, even when it lacks any therapeutic purpose. Although there are appropriate uses for medication, lack of oversight has led to clear and systemic abuses. No one should be medicated for the purpose of controlling behavior.


This isn’t a new problem. Data from the National Core Indicators project, a national database run by the Human Services Research Institute and the National Association of State Directors of Developmental Disability Services, shows that the percentage of people with developmental disabilities receiving psychotropic medications is much higher than the percentage who have the co-occurring mental health conditions which might justify their use. The long term side effects of such inappropriate usage include obesity, diabetes, long term brain damage, injury and even death. As a result, we are asking you to join us in writing to the New York Office of People with Developmental Disabilities and the NY Legislature to tell them to take action against chemical restraint today! Our action alert can be found at: http://www.change.org/petitions/tell-new-york-to-stop-the-chemical-restraint-of-people-with-disabilities


Your voice will help make a difference. Please take the time to send a message to the State of New York that chemical restraint is never appropriate, then pass along the action alert to your friends and family and ask them to do the same. Help us spread the message far and wide.


Thank you for your advocacy,


The Autistic Self Advocacy Network

As we approach the end of the year, many of you will be getting ready to spend the holiday season with your families. As you do, we hope you’ll take a moment to remember all that we’ve accomplished together this year.

 


From our Navigating College handbook to our Symposium with Harvard Law School on Ethical, Legal and Social Issues in Autism Research, this has been an exciting year for the Autistic Self Advocacy Network. We celebrated our fifth anniversary, engaged in advocacy on critical issues like stopping the Judge Rotenberg Center’s abuse of children, fighting for more public support on critical topics like transition supports, true community integration, stopping restraint and seclusion and more. 

 


In addition, our programming has helped build a stronger voice for the Autistic community in many sectors of American life. In our Keeping the Promise report, we partnered with other national self-advocacy groups to help define community living resulting in a document now being used by advocates and policymakers nationwide. Through our participation in the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), we are breaking new ground by ensuring the participation of Autistic voices in the research process. What’s more, 2012 promises to bring even more progress.

 


In 2012, our new internship program with Freddie Mac will result in new job opportunities for Autistic adults. Our forthcoming Autism Campus Inclusion initiative will help train the next generation of Autistic leaders and build a network of Autistic-run organizations on college campuses across the country. Not to mention our continued advocacy and activism to ensure that wherever autism is being discussed, we have a voice at the table – together.

 


Will you help support our work to keep the self-advocate voice front and center in 2012? Please consider an end of year donation to the Autistic Self Advocacy Network. With your help, the momentum we have begun this year can continue and build real and lasting change for our shared community. All donations are tax-deductible.

 


Sincerely,

Ari Ne’eman

President

The Autistic Self Advocacy Network

PS. If you are unable or uncomfortable making donations online, donations can be sent to

The Autistic Self Advocacy Network
PO Box 66122 NW 
Washington, DC 20035



Dear Readers,


Wishing you all the best throughout the season and a safe and happy 2012.


Warmest Wishes,

Julie

xx



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.

 


Preparation


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


Fledglings
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


KidsOut
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


LDAlearning
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


TFH 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

http://www.aspie-editorial.com/2011/01/09/nas-ten-ideas-for-a-happy-christmas/


Grieving: 7 Tips To Get You Through The Holidays

http://www.aspie-editorial.com/2011/01/09/grieving-7-tips-to-get-you-through-the-holidays/

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

http://www.aspie-editorial.com/2011/01/22/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’:

http://www.aspie-editorial.com/2011/01/22/holiday-shopping-tips-christmas-stress-management-why-holidays-dont-have-to-be-happy/

NAS: ‘Tis the Season to be Jolly:

http://www.aspie-editorial.com/2011/01/22/nas-tis-the-season-to-be-jolly/

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

http://www.aspie-editorial.com/2011/01/22/introverts-party-survival-tactics-the-party-predicament-introverts-health/

LEGO NAS Charity Calendar 2010 & New LEGO Games:

http://www.aspie-editorial.com/2011/01/22/lego-nas-charity-calendar-2010-new-lego-games/

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

http://www.aspie-editorial.com/2011/01/22/the-novelty-warehouse-sensory-toy-shop/


Introvert’s Guide to Holiday Merriment:

http://www.aspie-editorial.com/2011/01/22/introverts-guide-to-holiday-merriment/


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

http://www.aspie-editorial.com/2011/01/22/managing-holiday-stress-alone-for-the-holidays-families-in-recovery/




Logo Harvard Law School

ASAN Symposium on Ethical, Legal and Social Implications of Autism Research
Where:

Harvard Law School
Room: Pound 212
1563 Massachusetts Avenue
Cambridge, MA 02138

Driving Directions Map of Law School Campus

When:
Saturday December 10, 2011 from 9:00 AM to 3:00 PM EST
Add to my calendar


The Autistic Self Advocacy Network and Harvard Law School are excited to announce the live webcast of the Symposium on Ethical, Legal and Social Implications of Autism Research. Topics covered will include prenatal testing, community participation in research methodologies, appropriate and inappropriate intervention goals and much more.


This symposium will serve a unique role in shedding light on ethics and values issues within the autism research community. By bringing together self-advocate and researcher participants, we hope this will serve as a starting point for meaningful dialogue between those conducting research on autism and the community of Autistic adults and youth. Confirmed participants include Administration on Developmental Disabilities Commissioner Sharon Lewis, ASAN President and IACC Public Member Ari Ne’eman, National Institute on Child Health and Human Developmental Director Alan Guttmacher, Emily Titon, Liz Pellicano, David Rose and many more.


This event is open to the general public without charge and is made possible by a grant from the Administration on Developmental Disabilities.


To view this live webcast, please tune in* starting at 9 AM EST on December 10, 2011. The webcast can only be accessed starting at this time.


*Webcast is only viewable on a minimum DSL or Cable internet connection. Please make sure you have the latest QuickTime player installed.


Minimum QuickTime Player Requirements for the PC


  • 2.0 GHz Pentium-class processor or better
  • – 512MB of RAM
  • – 32MB video RAM
  • – QuickTime 7.1.3 or later
  • – Windows XP Service Pack 2 or Vista

Minimum QuickTime Player Requirements for Macintosh

  •  
  • – 1 GHz G4 processor or better
  • – 256MB RAM
  • – 16MB video RAM
  • – QuickTime 7.1.3 or later
  • – Mac OS X 10.3.9, 10.4.9 or later
Please join us as we begin this exciting conversation.


Sincerely,
The Autistic Self Advocacy Network