Like any book on autism, some of the tips in these books will apply to your child and your situation, and others may not. But with 1001 tips there are many to choose from. The book for parents of autistic girls is a great resource, as lately there have been a few books published on Aspie girls but nothing really for those on the other parts of the spectrum. When it comes to puberty and the teen years, parents of girls need information about how to handle the changes puberty brings (I think you get the picture).

On Thanksgiving Eve, I am grateful for the autism community of parents, professionals and support staff who have shared their wisdom as we search for enlightenment. In honor of the release of these two 1001 Tips  for Parents, I’m sharing my favorite tips for making it through the holiday season from my recent Psychology Today blog. Parents, you may find these useful in making it through the upcoming month and a half. I know how difficult it can be.

(If these tips don’t work, remember the three V’s – valium, vodka, vacation, but not if you are driving and certainly not for your child. – Disclaimer: The information appearing between these parenthesis was written to incite laughter, and is not to be taken as medical advice, please check with your doctor before self-medicating).

Why the holidays are so difficult for families with autism and what can help

Often parents in the autism community will joke that we 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 my book, 41 Things to Know About Autism, published earlier this year :

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 fell 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 stim (get engrossed and play) 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.

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:

• Explain the difficulties your child has with the holiday dinner environment, decorations, noise etc.
• Let them know he is not just misbehaving, and that he is learning little by little to handle these situations
• Explain about dietary challenges so they don’t expect him to eat what everyone else is eating.
• Ask if there is a quiet room (child -proof in terms of décor) where your child can retreat for some quiet time to escape the commotion and noise.
• Send them a short but sweet letter or email ahead of time explaining why your child acts the way he does and the difficulties of the holidays form his point of view. They will have a better understanding of why she won’t wear a dress or he won’t wear a necktie, and why as more and more people start arriving, he tries to escape the room.

To prepare your child:

• Make a social stories book about what will be happening and the behavioral expectations. If possible include photos of who he will be seeing, the house  decorated during last year’s holiday season. If he is going to church, do the same for that environment.
• Play some of the music he may be hearing at this holiday season.
• Practice unwrapping presents – wrap a bunch of boxes up with favorite treats inside and have him open them to get to them.
• Practice a handshake if he can tolerate that.
• Write rules together – ie how long he thinks he can tolerate sitting at table, and the expected behavior.

On the day of the holiday celebration:

• Remind your child of the agreed upon rules
• Pack some little toys he can play with in his lap at the dinner table
• Bring some foods he can eat, especially if he is on a specific diet.
• Arrive early so that the noise level builds up slowly for him.
• Do not let the expectations of others ruin your day. Do what you need to do to make it as comfortable as possible for you and your child.

Holidays can be difficult because of all the expectations, as well as the sensory challenges, but with planning and information sharing the holidays can be more enjoyable for all.

Jeremy graduated from high school with a GPA of 3.75 on June 18, 2010.
He auditioned for, and was chosen to give  a commencement speech.

The program is “The State of Things” on North Carolina Public Radio station WUNC.  Longtime NPR correspondent Frank Stasio hosts the program, which  this time  focused on autism.

The way Franc Stasio introduced me is a description I think describes what all autism moms and dads tend to be – strategists:

“… Jeremy is almost 22 now and  he is thriving thanks to an army of experts whose chief strategist and leader of the troops is his mother.” Frank Stasio, host of radio show ‘The State of Things” on WUNC, North Carolina Public Radio, April 2010.

I was on a panel that will include  Autism Society of North Carolina  spokesperson David Laxton; and a representative of the North Carolina TEACCH program, and Daniel Coulter.  TEACCH stands for “Treatment and Education of Autistic and related Communication Handicapped Children” and is associated with the North Carolina School of Medicine.

Autism: It's A Family Affair

This article was posted on my Psychology Today Blog, The Autism Advocate , on March 26, 2010.

A couple of years a go I was asked to write an article on The Affects of Autism in Families and in Partner Relationships,  for the May/June 2008 issue of  Family Therapy Magazine.  Lately I have been getting emails in regards to autism and marital stress, and I thought I would reprint part of the article here, since the information is still valid. If you are interested in this topic, you may wish to read the chapter on  the financial and emotional stresses of autism on the family that appears in my new book 41 Things to Know About Autism (just published by Turner Publishing).

Family life is all about relationships and communication: relationships between two people in love, parents and children, siblings, extended family members. Yet, autism spectrum disorders (ASDs) are all about communication challenges, misunderstanding of social cues, and lack of emotional understanding, thus affecting every relationship in the family. In marriage, if one of the partners is on the spectrum, there will be more difficulties than the usual marital conflicts. Sibling issues are exacerbated by having an autistic sibling and/or a parent on the spectrum. Communication and social challenges can also impact the adult’s work situation. Grandparents are concerned about the effects of autism on their adult children (the parents), other grandchildren and future generations.

Autism: It’s a Family Thing
It has been estimated that the divorce rate is in the 80% range in families with children who have autism (Bolman, 2006). Despite high rates of marital conflict, many couples do not reach out for couples therapy. Lack of respite is a major reason. For most, finding a babysitter with whom then can safely leave an autistic child who has toileting issues, little communication skills, aggression and other inappropriate behaviors on a regular basis is difficult (Sicile-Kira, 2004). Another reason is their lack of belief that they will find a therapist understanding of their particular circumstance and offer any true guidance, thus preferring to use the precious time away from the child to confide in a good friend.

Marital stress around the child usually starts when one or both of the parents realizes the child is not developing properly. Couples who have a child who does not seek their attention in the usual way (i.e., eye contact, reaching out for or giving of affection, searching them for comfort when hurt) find it hard not to feel rejected or unimportant to the child. For those whose child develops normally and then regresses around 18-24 months, there is the added loss of the child they knew slipping away. Consider also that a couple looks forward to having a child, and each person had his idea of what the expected child will be like. When the child does not match the expectation, or regresses, there is a loss and anguish felt by the parent not unlike the stages of grief that people who lose a loved one experience (Sicile-Kira, 2004).

Other stages of added stress are: getting a diagnosis (family physicians are reluctant to make a diagnosis on a condition once rare for which they have no set treatment plan to prescribe); getting services (a constant struggle); dealing with adolescence (sexual development appears, uncontrolled tantrums can be dangerous as the teen gets bigger); and post high school (the realization that few adult services are available) (Sicile-Kira, 2006).

Keeping any marriage healthy takes time, and all too often, time gets swallowed up by the autistic child’s needs. Many children with an ASD have difficulty sleeping, meaning that at least one of the parents is sleep deprived. Usually, a role division takes place as one parent, usually mom, becomes the autism expert, while dad works harder to earn money or opts out. Differences of opinion exasperate an already difficult situation – how much time, energy and money is to be spent on helping the child is based on personal philosophy, and in this the couple may clash. Over time, dad becomes frustrated at the demands of their wives to interact or play with a child who does not know how, and moms become frustrated at the lack of involvements of their partners.

As well, a common pattern among moms is to wonder what they did wrong – drinking or taking medications during pregnancy, exercising too much, allowing the child to be vaccinated, thus adding feelings of guilt to an already stressful situation. Also, the couple eventually feels isolated because they feel it is hard to take an autistic child to people’s homes and are uncomfortable inviting people over.

Sometimes the couple becomes closer than ever, bonded in their shared circumstances. Unfortunately, usually the stress of dealing with autism and all it entails – the constant and necessary advocacy at school, the fighting for services and supports, the added financial burden, trying to handle behaviors and meltdowns at home – becomes a wedge pushing the spouses further and further apart. Overwhelmed, stressed and exhausted, the couple’s communication becomes impaired and even autistic-like, lacking emotion and reciprocity. This can affect other children in the family.

How Therapists Can Help
There many ways in which therapists can help the family unit. For all those who need more information or need access to a support group and are not yet hooked into resources, there are various support groups available in different areas. Check on the websites of national organizations such as the  Autism Society of America, TACA, and NAA.

Couples need to be encouraged to acknowledge and face the emotions of the grief cycle (i.e., denial, grief, depression, anger) and the loss of the child they were expecting, and to work through these emotions. Misdirected anger is often released at school personnel in Individualized Educational Program (IEP) meetings or taken out on service providers, thus alienating the very people who are there to help them.

Encouraging couples to regularly schedule time together without the children is important. However, this suggestion is useless unless the therapist can support them in devising a practical plan for finding the respite help they need.

The lack of qualified babysitters can be a very real obstacle to finding time together or continuing therapy. Working on good communication skills and looking at how they can support each other is important. The couple needs to realize and accept that their partner may react differently to having an autistic child and a different viewpoint when it comes to how much effort and money to put into treatment, as well as what kinds of treatments to pursue.

Encouraging dads to take a more active role with agreed upon treatments, generalizing some of the skills the child has learned through his ABA (Applied Behavioral Analysis) program, helping with structure, limit setting and discipline can be very helpful. For this to occur, dad needs more information and training. Perhaps coming up with some dad-oriented informational materials could be useful. A good on-line support group for dads is http://www.fathersnetwork.org/

References:

Autism Society of America, 2008. “Family Life.” http://www.autism-society.org
Bolman, W. 2006. “The Autistic Family Life Cycle: Family Stress and Divorce.” asa.confex.com/asa/2006/techprogram/s1940.htm.
Sicile-Kira, C. 2006. Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical and Transition Needs of Teenagers with Autism Spectrum Disorders. New York: Perigee.
Sicile-Kira, C. 2004. Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, and Other ASDs. New York: Perigee.

For Emily Gerson Saines, Executive Producer, this movie has been a labor of love for nne years. A parent of a child diagnosed at three, she was given Temple’s autobiography, “Thinking in Pictures,” by her own mother. The book became a source of inspiration for her in raising her own child.

Temple is well-known for her ability of thinking in pictures, and I was therefore curious as to how she would react to seeing her life in images created by others, not necessarily the same pictures she has in her mind about her life. Temple discussed her thoughts with me about the movie.

How much input did Temple have on the making of this movie?

“I gave input into the screenwriting, spent a good amount of time, four days, with the writers and two days with the director. I think they did a great job. They built a cattle dipping vat based right on my original, off of my drawings. My drawings are all over the movie; I really liked that. In a scene near the end of the movie, I am selling a job to one of the meat plants, my drawings are out on the conference room table. Well, not my originals, I copied them at Kinko’s! They did really cool animations of the conveyor system for handling cattle at the slaughter plant from those drawings – really cool animations taken form my drawings – they really emphasized my projects. The cattle stuff was very accurate. They showed all the sexual discrimination I had to put up with in the livestock field. Women did not work in the yards back then just the office. It’s a lot better now.”

What was it like for Temple to see Claire Danes playing her?

“Weird. It was weird to see me on the screen. It was like going in a weird time machine, going back in a time machine into the 60’s. They put a wig on Claire and dressed her up in clothes and she had to wear these ugly false teeth apparatus. She looked like me, except she was shorter than me and we couldn’t do anything about that, but she sounds and moves just like me. She does accurately portray how I would act in the 60s and 70s. Claire did a great job.”

How did Temple help Claire prepare for the role?

“We met in New York for a half a day and I gave her all my tapes of me, of old lectures from the late 80’s, early 90’s and an old Larry King show I did. I only had still photos from childhood; they didn’t take video in our house then. Claire had a voice and movement coach.

Did the film attempt to portray how Temple’s mind thinks in pictures; and if so how did they do that?

“The movie is great. They really showed how my mind works. They have a neat scene where they show how I think in pictures, very effective. I love how they showed that. They showed sequentially pictures of ‘shoes’ that is exactly how I think – like snapshots of different types of shoes: high heels, flats, all different types and shapes and colors.”

What was Temple’s favorite aspect of the movie?

“The visualizations and they way they used my drawings. They showed the optical illusion I built, the science teacher challenged me to do that, the Amesʼ “Distorted Room. They built a working squeeze machine I designed and the gate at my aunt’s ranch.”

What was it life for Temple being on the movie set, watching them put her life story into pictures?

“I only watched a small part of it being filmed. I watched it through a monitor because I didn’t want to make Claire nervous. What really interested me was the number of people on the set that had Asperger’s Syndrome. Smart people. Let’s just say they weren’t sweeping the floor. They are all part timers. There are a lot of technical jobs in production and it was like a big construction project.”

What message does Temple want people to take away from seeing this movie?

“I hope one of the things they get from it is the importance of a good teacher and mentors. Mr. Carlock (David Strathairn) saw that I had some areas of strength and he developed that. He spotted my ability with science; mentors are attracted to ability. Sometimes you find the mentors in the oddest places. In fact, the first meat plant I ever went to, I got in because I met the wife of their insurance agent, because she liked my hand embroidered shirt.

People are going to hire you because of your skill not your personality. You need to have a portfolio to show them what you can do. When I first went into the American Society of Agricultural Engineers, they thought I was weird, they didn’t even want to talk to me. Then I whipped out the cow dip vat drawing and that made them respect me.

Also, it’s important for people with Asperger’s to understand they need to make things that people want in order to make a living. Like the opening gate at my aunt’s farm – I would get upset at my aunt, but I ended up building the gate my aunt (Catherine O’Hara) wanted. I figured out how to open the gate without getting out of the car. This gate – it solved other’s people’s problems. That’s something you can make money from. The gate was an early project at age 16 before I made the squeeze machine. I hope this movie inspires a lot of parents.”

What is it like for Temple to know that there is a movie of her life out there?

“Well, I’ll never get a fat head. I’ll go on the movie tour, and go on my book tours, and then I’ll come back here. I never forget what my real job is, which is my livestock stuff. Today, I’m having lunch with one of my students to discuss a project we are working on together. That’s my real job.”

A few days after talking to Temple about the movie, I was given the opportunity to see it. I have to agree with Temple. It’s a great movie and not just for people interested in autism or cattle, because It’s a wonderful, inspirational, and entertaining story. The messages that Temple hopes people will take away are true for everyone, not just those with Asperger’s, especially in this economy. As a friend of Temple’s I was impressed with Claire’s interpretation of her: she really sounds and moves like Temple. As a former production professional, I appreciated the effort and care with which they took words on a page and translated them into sounds and images that accurately portrayed a person who is a hero to many of us – not an easy thing to do. As a parent of a child with autism, I could not help but relate to Temple’s mother, Eustacia Cutler (Julia Ormond), and was moved to tears during the final scene. Watch this movie, you’ll be glad you did.

This article was first published on HuffingtonPost.com, January 13, 2010.