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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

 

 

 

 

 

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. 

“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:

3) Board games

4) Music

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/   

NAS:  Ten Ideas For A Happy Christmas

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

Grieving: 7 Tips To Get You Through The Holidays

https://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:

https://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’:

https://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:

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

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

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

LEGO NAS Charity Calendar 2010 & New LEGO Games:

https://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):

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

Introvert’s Guide to Holiday Merriment:

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

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

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

 

By Margarita Tartakovsky, M.S.
Associate Editor

Let’s face it: We tend to over-complicate the holidays and put a lot of pressure on ourselves (and possibly others) in the process.

“People often have an image of how the holidays should be,” according to Darlene Mininni, Ph.D, MPH, author of The Emotional Toolkit, who works privately with individuals and speaks nationally on topics related to emotional health and well-being.

And those shoulds usually translate into pursuit of the perfect holiday. We try to find the perfect presents or plan the perfect parties, said Master Certified life and career coach Kristin Taliaferro. And since perfection is impossible, all we end up doing is getting disappointed and stressing ourselves out.

Keeping things simple this holiday season can help you stave off stress and focus on what counts. Each person may have a different idea of what a simple holiday looks like, depending on your traditions, family life and financial situation.

But we can probably all agree that a simple holiday is one with fewer obligations and headaches and more relaxation and joy. Here are nine ways to enjoy just that.

1. Don’t take the holidays so seriously.

Realistically, a lot can go wrong during the holidays. But instead of getting distressed and being disappointed, “keep a sense of perspective and humor about the madness of parking lot traffic jams, weird in-law vibes, crazed children jacked up on sugar and other stimulants, packed stores, long lines, credit card denials, you name it,” said Rick Hanson, Ph.D, a neuropsychologist and author of Just One Thing: Developing a Buddha Brain One Simple Practice at a Time.

2. Focus on what’s truly important.  

Sometimes, we get wrapped up in the superficial parts of the holidays. Take gift shopping, which is a big stressor and another way we complicate life for ourselves. “Rather than feel guilty if you’re not buying your child a Nintendo 3DS or surprising your mate with a special extravagance, step back and look for the deeper meaning of your celebration,” Mininni said.

That deeper meaning lies in our relationships. “That’s because science shows that relationships are the key to happiness, regardless of your income,” she said. She suggested readers ask themselves this year: “How can I use the holidays to strengthen my relationships with others?”

Also, you might focus on other holiday perks like the time off and profound principles like gratitude, generosity and the religious and spiritual aspects (if they’re significant to you), Hanson said.

3. Simplify gift-giving.

It’s the simple things—not extravagant gifts—that can help you deepen your connections with others. Mininni suggested giving loved ones framed photos (that include those family members or friends) or writing personal letters. “Tell them what they mean to you, or thank them for what they’ve given you,” she said. “It’s a keepsake they’ll treasure longer than a sweater.”

4. Have potluck dinners.

Mininni also suggested people have potlucks with their friends and family. Not only do these events provide the opportunity to connect and make memories, but because everyone is pitching in, you only need to make one or two dishes. (That makes it great for trimming your to-do list!)

5. Commit to less.

The fewer commitments you make, the simpler your holiday will be—especially when you consider that you’re piling on activities and tasks to what’s likely an already full plate. Don’t worry about disappointing others if you can’t make it to a certain event or prepare a special dish. Overextending yourself just leaves you more stressed. (And a lot less fun to be around!)

6. Volunteer.

“Giving to others and building a community strengthens your feelings of connection and your sense of happiness,” Mininni said. And it’s a simple way of making a big difference.

Read in Full:

http://psychcentral.com/blog/archives/2011/11/22/9-ways-to-have-a-simpler-but-more-satisfying-holiday/

By Rick Nauert PhD Senior News Editor
Reviewed by John M. Grohol, Psy.D. on November 23, 2011

Psychiatric disorders are believed to be a barrier for appropriate and timely medical care among vulnerable populations.

A new investigation studied if pre-existing depression (with and without anxiety) would influence the time to diagnostically resolve an abnormal mammogram and/or Pap test.

Researchers from Boston University School of Medicine (BUSM) discovered suffering from depression was not associated with a prolonged time to diagnostic resolution in a vulnerable population of urban women.

Cancer outcomes are influenced by the time to treatment after an abnormal cancer screen. Some studies have found that women with psychiatric disorders are less likely to receive cancer screening and may also have delays in diagnostic resolution after an abnormal screening test.

Vulnerable populations of women, as defined by low income or with racial/ethnic minority status, are less likely to receive standard preventive health care, which contributes to worse breast and cervical cancer outcomes.

Depression is prevalent in these populations, and may lead to worse health care outcomes.

In recognition of these variables, researchers conducted a retrospective chart review of electronic medical records to identify women who had a diagnosis of depression or anxiety in the year prior to the abnormal mammogram or Pap test.

They used time-to-event analysis to analyze the outcome of time to resolution after abnormal cancer screening.

Read in Full:

http://psychcentral.com/news/2011/11/23/mood-disorders-may-not-hinder-cancer-diagnosis/31816.html

Article Date: 24 Nov 2011 – 0:00 PST

A patient’s viewpoint of the severity of irritable bowel syndrome (IBS) symptoms can be influenced not only by physical symptoms of IBS but broader psychological problems, according to a new study in Clinical Gastroenterology and Hepatology, the official journal of the American Gastroenterological Association.

“Clinicians who face pressure to treat patients in a cost-effective manner within tight time constraints and at a satisfactory level are likely to find that patient-reported outcome data can increase their understanding of what patients mean when they describe how they function or feel,” said Jeffrey Lackner, PsyD, of the University at Buffalo School of Medicine and Biomedical Sciences, and lead author of this study. “To maximize the utility of patient-reported outcomes, it is important to know what they measure and what influences patients’ perceptions of their symptoms when gastroenterologists ask them about their symptoms. Our study suggests that irritable bowel syndrome patient-reported outcomes are not simply about gastrointestinal symptoms.”

Patient-reported outcomes (PROs) are used to describe symptoms, inform treatment planning and gauge the benefit of treatments for gastrointestinal disorders, including IBS. In this study, funded by the National Institute of Diabetes and Digestive and Kidney Diseases, researchers explored two different PRO rating scales that measure IBS severity, and identified psychological factors that might bias PRO ratings by affecting how patients interpret symptom severity. They found that a substantial proportion of the variation in the PROs (50 to 55 percent) could be explained by three distinct gastrointestinal (GI) symptoms: pain, bloating and defecation.

While the study showed that GI symptoms explain some of the variance in overall IBS severity scores, there was a large proportion of variance that was not attributable to symptoms that may be explained by psychological factors. For example, pain catastrophisizing (the belief that pain is awful), somatization (converting distress into physical symptoms) and anxiety sensitivity (fear of arousal symptoms) had a direct association with GI symptoms, but not with overall IBS severity. This suggests that psychological factors affect severity through their impact on GI symptoms.

Read in Full:

http://www.medicalnewstoday.com/releases/238072.php

By Rick Nauert PhD Senior News Editor
Reviewed by John M. Grohol, Psy.D. on November 23, 2011

A new report concludes that people with anorexia nervosa struggle with questions about their real, or “authentic,” self.

Researchers believe an understanding of the conflict has implications for compulsory treatment. Clinicians believe an approach that explores ideas of authenticity may represent a new therapeutic avenue and could provide insights into whether compulsory treatment can be justified.

Researchers in the UK interviewed 29 women who were being treated for anorexia nervosa at clinics throughout the south of England. In the interview, women were asked about how they viewed their condition, including their understanding of it, how they feel about compulsory treatment, and their thoughts about the impact of anorexia on decision-making.

Although the researchers did not ask about authenticity or identity, almost all of the participants spoke in terms of an “authentic self.” Moreover, researchers report that, “for almost all, the relationship between anorexia nervosa and this authentic self was a significant issue.”

Participants characterized this relationship in different ways. Many saw anorexia as separate from their real self. Some expressed the idea of a power struggle between their real and inauthentic self. Others said that other people could provide support to enable the authentic self to gain strength within the struggle.

The discovery that patients view their illness as separate from their authentic self is viewed by researchers as a sign of hope.

Read in Full:

http://psychcentral.com/news/2011/11/23/many-anorexics-struggle-with-authentic-self/31811.html

Featured Article
Academic Journal

Article Date: 25 Nov 2011 – 2:00 PST

In most cases, autism is caused by a combination of genetic factors, but some cases, such as Fragile X syndrome, a rare disorder with autism-like symptoms, can be traced to a variation in a single gene that causes overproduction of proteins in brain synapses, the connectors that allow brain cells or neurons to communicate with one another. Now a new study led by the same MIT neuroscientist who made that discovery, finds that tuberous sclerosis, another rare disease that leads to autism and intellectual disability, is caused by a malfunction at the opposite end of the spectrum: underproduction of the synaptic proteins.

Mark Bear, the Picower Professor of Neuroscience and a member of the Picower Institute for Learning and Memory at Massachusetts Institute of Technology (MIT), and colleagues write about their findings in the 23 November online issue of Nature.

It seems puzzling that underproduction of synaptic proteins and overproduction of those same proteins lead to the same disorder, but it does fit into the idea that autism is caused by a wide range of problems to do with brain synapses, as Bear tells the press in a statement:

“The general concept is that appropriate brain function occurs within a very narrow physiological range that is tightly maintained.”

“If you exceed that range in either direction, you have an impairment that can manifest as this constellation of symptoms, which very frequently go together – autism spectrum disorder, intellectual disability and epilepsy,” he adds.

Read in Full:

http://www.medicalnewstoday.com/articles/238249.php

Article Date: 25 Nov 2011 – 0:00 PST

In the 19th century, Francis Galton noted that certain people who were otherwise normal “saw” every number or letter tinged with a particular color, even though it was written in black ink. For the past two decades researchers have been studying this phenomenon, which is called synesthesia. In an “Unsolved Mystery” article and accompanying podcas published in the online, open-access journal PLoS Biology, David Brang and VS Ramachandran strive to bring synesthesia into the broader fold of biology and to the scientific study of the arts through understanding its evolutionary basis.

Ramachandran and colleagues have demonstrated that synesthesia is an authentic and repeatable phenomenon, and that it has a sensory basis rather than a high-level mental association. For grapheme-color synesthesia (where colors and numbers evoke perceptions of colors), they suggested that this occurs through cross activation between sensory brain regions concerned with color and number. However, showing that the phenomenon is valid and caused by enhanced connectivity in the brains of synesthetes still left open the questions of how and why synesthesia evolved in the population.

As Dr. Ramachandran points out, one possible answer comes from the fact that synesthesia is purported to be 7 times more common in artists, poets and novelists than in the rest of the population. Dr. Ramachandran suggests that “if the mutant gene was expressed diffusely throughout the brain (not just in color and number regions) and concepts and ideas are also represented in distinct brain regions, then a more ‘cross-wired’ brain would have a greater propensity to link seemingly unrelated ideas.” This ‘hidden agenda’ of the synesthesia gene (making some outliers in the population more creative) gives rise to one possibility of why it has survived.

Source:

http://www.medicalnewstoday.com/releases/238124.php