Why the Holidays Can Be So Difficult for Families Dealing with Autism and What You Can Do to Help Make This Holiday Season Easier

Photo by veggiefrog

The holidays can be a joyful and stressful time of year for most of us, but can be even more stressful when dealing with a loved one with an autism spectrum disorder (ASD). Individuals with an ASD may need extra time adjusting at family gatherings, may require additional preparations before family events, and tools (i.e., picture schedules, coping strategies) that will make the holidays more predictable and part of their routines. Proactive measures will help and prepare both the individual with the ASD and their families. Remember to keep in mind that you can always say no to a family or friend’s event, if you know ahead of time that the individual with the ASD will not be able to tolerate the holiday occasion.

The following is an article which discusses common issues you might encounter during the holidays, and strategies to make the next couple of weeks go a little smoother.

Published on November 7, 2010 by Chantal Sicile-Kira in The Autism Advocate

Often parents in the autism community will joke that they become more religious during the holiday season that begins with Thanksgiving: we pray our children will behave while we are visiting relatives, we pray they will show interest in their gifts (and not just the ribbon), we pray they will sit at the dinner table, we pray they won't hit the relative who tries to kiss them, and above all - we pray that we will have the strength to politely ignore the judgments passed upon us and our ‘misbehaving' children.

Here are some areas of difficulties for children on the spectrum and their families during the holiday season, from the book, 41 Things to Know About Autism:

• The stores are full of noise, lights, lots of people, and winter holiday music that can create major overwhelm for those with sensory processing challenges.
• Social requirements such as relatives wanting a hug or a kiss that can feel painful.
• Holiday dinners where they are expected to try foods or sit for long periods of time with so many people and so much commotion.
• Many children are mesmerized by the colors and textures of the ribbon and wrapping paper and do not open the present but self-stimulate (get engrossed and perseverate) with the wrapping
• The child does not understand personal space or have safety notions and so may run around the house or try to play with something breakable.
• Relatives may think that the child is misbehaving, and may try to discipline the child, not realizing that the child really can't help it, and that discipline is not helpful when it comes to sensory overload and high anxiety.
• Parents have a difficult time because they know there are certain expectations of behavior that relatives and friends have and that the child cannot fulfill.

Celebrity Hosts and Judges announced for “Got Talent 2” Grand Finale [Updated]

Musical comedy sensation The Parodivas will host the grand finale of "Got Talent 2," a benefit for QSAC. The event will take place November 29 at 7 PM at the Midtown Theater.

The panel of celebrity judges will include comedy's lovable ‘Queen of Mean’, Lisa Lampanelli; Acclaimed TV, Broadway and cabaret performer, Eileen Fulton; and talent manager Henry Ravelo, of Six Degrees Mgmt & PR.

Martha Wash, an original member of the disco group The Weather Girls, who were Grammy-nominated for "It's Raining Men," will perform her new hit.

Twelve finalists will take part in the competition. Semifinals are currently taking place. Each finalist has a webpage to collect additional votes and raise funds for QSAC; each vote costs a dollar.

Entertainment industry professionals during the quarterfinals included: Janet Pailet (TV/Film Producer), Steph Watts (TV Reporter/Host), Ben Cameron (Actor/Host), Gayle Seay (Casting Director), Robin Lyon (Actress), Paul Wontorek (Editor-in-chief/Broadway.com), Barry Kolker (Talent Agent), Casper Andreas (Producer/Writer), Hugh Hysell (President of HHC Marketing), and Emily McNamara (Actress).

The Midtown Theater is located at 163 West 46th St. For tickets ($25 to $150), more information and to vote online, visit qsac.com/talent.

Autism: What to Expect in the Diagnostic and Statistical Manual 5th Edition (DSM-V)

There is a growing consensus to redefine the assessment and diagnosis of Autism Spectrum Disorder (ASD), which will culminate in the publication of the DSM-V expected to be released in 2013. The three symptom domains of the DSM-IV (impairment in socialization, language and speech deficits, and restricted repetitive patterns of behaviors) will likely become two in the DSM-V (Social/communication deficits and fixated interests and repetitive behaviors). Advanced knowledge and methods of diagnosis suggest that deficits in communication and social behaviors are inseparable and represent a single set of symptoms. Delays in language are not unique or universal in Autism Spectrum Disorder (ASD), which may be considered as a factor that influences the clinical symptoms of ASD, instead of a defining diagnosis of Autism Spectrum Disorder. Merging both criteria of social and communication deficits is thought to improve the specificity of the diagnosis of Autism Spectrum Disorder.

The DSM-V is proposing to regroup the five diagnostic categories listed in the DSM-IV, which include autistic disorder (autism), Asperger’s disorder, childhood disintegrative disorder, pervasive developmental disorder not otherwise specified (NOS), and Rett’s Disorder, into one category, autism spectrum disorder (ASD). Therefore, Autism Spectrum Disorder will include all previous categories except Rett’s Disorder and Childhood Disintegrative Disorder, which are understood to have a distinct genetic component.

Presently, the standard clinical practice is to make the diagnosis of autism prior to 3 years of age, especially for those individuals at risk of autism (developmental delays, challenging behaviors, birth defects, epilepsy among others conditions). Clinicians can use different tools (e.g. ADI-R, ADOS, M-CHAT) to make the diagnosis, although it can be a challenge to determine what evaluation tool to use.

Since the criteria for diagnosis in the DSM-V are based on certain observed behaviors and some social symptoms appear later in life especially for Asperger’s Disorders individuals, the diagnosis will likely continue to represent a challenge for clinicians and parents (Matson, et al. 2012). For instance, sometimes parents may have early concerns about some symptoms that are not included within the autism diagnostic criteria and not likely to result in the diagnosis at that time. Yet, at a late time, their child may still receive the diagnosis due to other presenting symptoms that are specific to the diagnosis. For making accurate diagnoses, we believe that clinicians should pay attention to motor and emotional problems, and/or the level of a child's activity in infancy (Lord et al. 2011). According to Lorna Wing and colleagues (2011), it seems that the DSM-V committee should make the DSM-V-criteria unequivocal and practical for clinicians. Ultimately, the precise diagnosis of autism is hindered by our incomplete understanding of the neuropathological basis of autism and the lack of objective biological measurements for its detection.

________

DSM: The Diagnostic and Statistical Manual is published by the American Psychiatric Association and provides a common language and standard criteria for the classification of mental disorders.

Board Member Paul Halvatzis featured in The Queens Gazette

The following excerpt was published in the November 16, 2011 issue of The Queens Gazette:

Shaving For Autism

To The Editor:

My son Paul has autism and has been receiving outstanding care from Quality Services for the Autism Community (QSAC) for many years.

Today these services are in jeopardy due to severe government cutbacks and I am asking for your help in raising funds to maintain the vital services that QSAC provides to my son and many other families across New York City and Long Island.

Recently my children challenged me to do something I have not done in more than 35 years. I will shave my mustache in an effort to raise support for the autism community. On December 30 at 6:00 p.m. at the Redken Saloon Salon in Astoria, I am going to have my mustache shaved off and am hoping that I can count on you, my friends and neighbors, to help me use this opportunity to make a real difference in the lives of thousands of people. With your help, I can raise my goal of $35,000.

Autism is the fastest-growing childhood disorder in America and is now considered a public health crisis. The Centers for Disease Control and Prevention estimates that an average of one in 110 children (one in 70 boys) in the U.S is living with autism. There is still no cure for autism. But there is QSAC. Please help me make this campaign a success. 

Go to www.qsac.com/shave and make a donation. I personally invite all supporters in the Astoria community to come and show you care and enjoy some wine and cheese with me at the December 30 event at Redken Saloon Salon at 36-17 30th Ave. in Astoria. All the funds that we raise together through the Mustache for Cash Campaign will go directly to helping people with autism and their families. For more information or to make a donation via the phone, call QSAC at 718-7-AUTISM, ext. 2059.

Paul Halvatzis

Astoria, N.Y. 

The Holidays and Autism...A Little Preparation Goes a Long Way

Hard to believe, but the holiday season is here! Everyone is busy cooking, shopping for gifts, company is coming over, school is out…The holiday season is magical for some, but can be hectic for a family with an autistic child. Thanksgiving, Christmas, Hanukkah, Kwanzaa--whatever your personal celebrations are, there is a lot to take in when you have a child on the spectrum. For children with autism this time of year can be particularly overwhelming: lights, crowds, traffic, visitors, waiting in line – this upsets children who are used to a particular routine. This time of year brings the autistic child and the entire family out of their usual routine and exposes them to people and places that they may not be familiar with. This can create a host of problems, including increased stress levels for all involved.

Social requirements such as relatives wanting a hug or a kiss can be overwhelming for your child. Holiday dinners can be especially difficult - your child may be expected to try new foods or sit for long periods of time with a lot of people and a lot of noise. Your child may not understand personal space or safety and may run around the house or try to play with something breakable. If your child cannot communicate what he/she wants tantrums might ensue. Relatives may think that the child is misbehaving, and may try to discipline the child, not realizing that the child really can’t help it, and that discipline is not helpful when it comes to sensory overload and high anxiety. 

Now is a good time to take a deep breath and make some very specific plans that will help you get through this period. What can you do? With some preparation, planning and information sharing, the holidays can be less stressful and more enjoyable. Here are some tips on how to prepare your friends and relatives whom you will be visiting the next few months more easily.

New York Becomes 29th State to Adopt Autism Insurance Reform

photo by Patja

New York Governor Andrew Cuomo has signed into law one of the most comprehensive autism insurance reform measures in the nation, Assembly Bill 8512 (http://open.nysenate.gov/legislation/bill/A8512-2011). This new law requires insurance companies to provide coverage of critical autism therapies for both children and adults.

The new law will provide coverage of evidence-based, medically necessary autism therapies, such as applied behavior analysis (ABA). It will take effect in 12 months – on November 1, 2012.

Planning online BA in Disability Studies

I've been part of a committee working on an online BA in Disability Studies geared to direct support workers.

The proposed BA will be coming up for a vote at The City University of New York very soon. Before it can move forward, the Executive Vice Chancellor would like to know of potential interest in the BA degree from workers in the field.

So, I need help to survey workers. If you have a BA, you are welcome to complete the survey, but responses from those who may not have a BA are especially useful.

The survey is on SurveyMonkey - it's very short and will only take 2-3 minutes to complete. 

Thanks for your help!

Stuck and Chatter [Guest Blog]

As I’ve said before, I am me and I think I’m perfectly normal. I don’t know any other self, any other mind or body, and so how could I feel like I’m lacking or unusual? I can’t. And I don’t.

But I do spend quite a lot of time lost inside my head. It hurts, literally hurts, to be pulled out and forced to engage. Sometimes I can’t and I shut down. Today, staff was here and I ate my potato and typed and just went away for a while. Staff knows not to talk to me or anything else when I’m either shoving my face in the cat or typing. That’s my time, and that’s my signal to them that I need a break. When I’m ready, I come back again.

Nobody ever asks me what goes on in my head. They ask what I think, or how I feel, or what I believe, or for my perspective… but that’s different. That’s what my mind does, my being. But my head does its own thing altogether.

Two things predominate in my head. One is the stuck. I’m always stuck. I get one thought, and that’s all that exists and that becomes my everything for the time being. As you may (should?) know by now, Elsie P is the number one subject of the stuck. I’ve been stuck on my cat for almost 14 years, and guess what? It’s not going anywhere. I can get stuck on needing something, wanting something, wanting someone, worrying about something, seeing something, going somewhere… you name it, I can get stuck on it.

2011-2012 Queens Family Support Guide

In a continuing effort to control costs and be environmentally conscious, the Queens Family Support Guide is now available in electronic format. 

You can also refer to the Queens Council on Developmental Disabilities website at www.qcdd.org.

On Video Modeling...

When talking about ideas for our blog, someone suggested that I write a poem; luckily I had already written one. It’s somewhat related to the topic of this blog, I’ve also been told that it’s kind of cheesy:

And This Is Our Focus…

To create an environment where our experience can focus on motivating our children to learn what we have the capability to teach them.

To promote the idea that we should reinforce not only our students, but also one another.

To create a strong sense of teamwork within our classroom, by placing our minds on the same page and our eyes on each other’s needs.

To ask for help, honesty, and dependability from those who give us feedback.

To utilize creative new technologies to help our students learn and make tools to get the job done.

To learn from our students, so that they can learn from us.

Utilize creative new technologies? Here we go another “hot topic” clinical blog about Video Modeling (VM). Just another “hot-topic” surely, we get the reasons why it’s so interesting. Kids like watching videos, right? Videos make the job easier for the teachers, right? No. In fact implementing VM takes more time, and certainly watching the teacher do something they may find boring, is surely not motivation. What we really need to do is explore more about the basic terms of ABA: Modeling, Shaping and Chaining, after that rendering videos can be a piece of cake, if you have the right tools.