Praise for A Full Life with Autism

May 20, 2012

Lars Perner, Ph.D., Chair, Panel of People on the Spectrum of Autism Advisors for the Autism Society of America, and Assistant Professor of Clinical Marketing, USC, had this to say about A Full Life with Autism:

Each individual on the spectrum is unique and will need personally tailored supports.  At the same time, because of autism’s complexities and seemingly contradictory characteristics, it is often difficult to get a view of the “big picture” of a life on the spectrum and the challenges that it presents.  In their very comprehensive—yet highly readable—book, Chantal and Jeremy succeed in addressing both of these concerns.

Although ample resources for addressing the diverse needs of individuals on the spectrum are presented, the case Jeremy illustrates the types of challenges, surprises, and opportunities  that may come up as an individual develops.  Chantal talks about initially not expecting Jeremy even to finish high school and subsequently being able to help him not just graduate but go on to college.  An especially intriguing issue discussed involved helping Jeremy understand that a girlfriend is not something that can just be “hired” in the way that one can secure aides and support workers—an issue that only the most clairvoyant parent might have anticipated. Although optimistic and filled with humor, the book clearly acknowledges challenges that this family faced and those that will likely be faced by others—including obstacles to finding long term housing opportunities and healing from traumatic events.

Although much of the writing is done by Chantal, Jeremy is a consistent, creative, and innovative contributor, talking candidly about his own experiences that have led to the lists of tips that he presents.  I especially love his observation that rights of disabled individuals “are founded on the Fourteenth Amendment of the Constitution.”  The book’s extensive list of issues that may come up will unquestionable leave many families much better prepared for handling the challenges that will come up over the years.

What IQ Tests Really Tell Us About Children with Autism

March 20, 2011

How to better administer psychological assessments to children with autism

This blog was first published on PsychologyToday.com on  March 19, 2011

In the past nonverbal children with autism were considered mentally retarded, and those who had difficulties in communication were considered intellectually slow. Now it has become more widely recognized that autism has nothing to do with intelligence.

Studies show that often children who are performing at grade level or above in school, have IQ scores that show them to have below average or even mentally deficient intelligence levels. IQ scores of children on the autism spectrum may not be accurate reflections of their innate intellectual potential.

For a child to perform to their ability on a standard IQ tests such as the WISC-IV and the Stanford-Binet, they must be able to quickly respond to verbal questions and have well developed motor skills. However, these are areas that are difficult for those with autism. In effect, these IQ tests do not tap the true cognitive ability of many children on the autistic spectrum, but rather tell us more about their communication and motor difficulties.

Children and teens with autism spectrum disorders are impacted by sensory processing challenges, and this as well can effect test results. A student may not be able to respond in a room with bright fluorescent lights or in an environment not conducive to someone with sensory processing issues.

Another reason why it is hard to know how much a person on the spectrum understands is that many with Asperger’s Syndrome may do well in answering test questions, but not necessarily realize how the information relates to them personally. For example, a middle school student may be able to tell you what he heard in health class, but he may not not understand or realize how this information (ie sex education) relates to him personally. For this reason, it is important that parents and educators ensure that students really have processed the information on a personal level.

It is important to remember that just because a person cannot talk does not mean that they are not understanding what is going on around them, what they are hearing in class, or reading in books. Conversely, just because a person sits in a class and can repeat to you what was said, does not mean he has internalized and learned it.

Joshua D Feder, MD, Child and Family Psychiatrist has these suggestions to make about administering psychological assessments :

• Think of all the sensory processing difficulties a child may be experiencing. For one-on-one testing, make sure that the room is quiet, has few visual distractions, and is not too brightly lit.

• Consider the difficulties of transitions for those with autism. Sometimes, clear explanations of what you will be doing together, what comes next, and what comes after, makes a big difference. Frequent breaks may be needed.

• Pay attention to regulation and co-regulation issues. Do testing with the child not to the child. Pay attention to joint attention and engagement, and find the balance between having expectations and trying to build rapport.

• Recognize that one-on-one testing may not show a child’s difficulties with same tasks attempted in the classroom. Children with an ASD may have been taught the ‘right’ answers, but ability to utilize the information may is limited. This is especially true with tests of pragmatic language that ask about what to do in social situations. Careful classroom and recess/lunchtime observations are an essential part of the evaluation.

• For younger or nonverbal children, it is important to observe what they chose to play with, and what they initiate in their actions. This initiation is often the key to finding what motivates them and what we can capitalize upon to help a child co-regulate and connect and move forward in social and cognitive growth

• For more verbal children, we often do not do projective testing with these children, however, the rates of depression and other secondary mental health problems are very high, and projectives often give us a way to understand the child’s experience of the world.

• There may be a lot of scatter in the subtests, so that more refined neuropsychiatric testing may be needed

The reality is, It’s hard to know how much a person on the autism spectrum knows because of the communication, motor, and sensory difficulties they may have, as well as the ability some have to repeat information that has not been internalized. All these things need to be considered when doing psychological assessments.

For more general information on Autism, read 41 Things To Know About Autism, and visit Autism College.

1001 Tips for Parents of Autistic Boys and Autistic Girls.

November 24, 2010

Those who have heard me speak at conferences or who read my books know that I love information that is usable. When it comes to books on autism, practical rules. Two books have just been published that are full of useful tidbits that parents will appreciate, and these are 1001 Tips for Parents of Autistic Girls by Tony Lyons, and 1001 Tips for Parents of Autistic Boys by Ken Siri.

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.

Self-Advocacy is a Needed Life Skill for Students on the Autism Spectrum Headed to College

October 17, 2010

Psychology Today blog, October 17, 2010 – Yesterday, as I was presenting on Autism Life Skills in Grand Junction, Colorado, I discussed the need for teaching self- advocacy to high school students with autism, including Asperger’s Syndrome..  At the end, a parent approached me and said she was shocked to learn that once their child on the spectrum graduates from high school, reaches the ripe old age of 18 and is planning to attend college, a parent is no longer the person responsible education-wise: the student is. This means that when they are  18 years of age and are college students, the college contacts the student, not the parent. If the student will be requiring any kind of accommodations, he or she – not the parent – will need to ask for them  and discuss the need with Disabled Student Services.

This is why it is important that before they graduate form high school, students  know how to advocate for their needs. This includes having a good idea of what their disability is and how to describe it, what kind of learning style they have, their strengths as well as their weaknesses, and know what accommodations they will need. These students should know their rights, be able to discuss the accommodations, and know how to carry on a conversation and convince the college of their need. Some Disabled Student Services are knowledgeable and helpful to  students on the autism spectrum, others are still more comfortable with students that have a physically challenging condition, and have a difficult time with those who have an ‘invisible disability’.

All students on the spectrum need to learn self-advocacy skills,  but those heading to college need to learn them before they  graduate. If you are a parent or an educator of a high school student,  have self-advocacy goals addressed in the  IEP (Individualized Educational Program) or ITP  (Individualized Educational Program).  High school is the best place for him or her to start learning these skills, if he or she  has not already done so. For some information on transitioning from high school to college, check out  Catching the Wave from Grossmont College, a community college in the San Diego area. Some of the resources and facts may apply only to California, but there is a lot of good information for high school educators and parents to consider.

Jeremy Sicile-Kira

Jeremy Sicile-Kira

Back to School 101: Tips for General Education Teachers About Students with Asperger’s Syndrome

October 13, 2010

This is from my Psychology Today blog published September 9, 2010

Often junior high and high school teachers have teenagers with Asperger’s Syndrome (AS) included in their classrooms, and are not given much in the way of useful information. Here I hope to provide a few practical tips that may be helpful to educators with no practical knowledge about students on the spectrum.

Parents, you may wish to print this out to give to your child’s teacher, or send them the link. There are only a few tips here, but usually teachers are receptive so practical information that may help them to understand and reach their student.

Asperger’s or High Functioning Autism (HFA) is often described as an ‘invisible disability’ because students on the spectrum do not look different frorm most students. Most teachers expect them to act like everyone else, but often the student gets in trouble for behaving in a way that seems rude, disruptive or non-compliant. A diagnosis of Asperger’s or HFA is based on challenges in the areas of communication, and social relationships, as well as what appears to be an obsession or passion for a particular area of interest.

Here are some tips that may help the school year go a little easier for you and your student on the spectrum:

* It’s a good idea to have a hard copy of the homework assignment to hand to your students on the spectrum, because most of them are mono-channel, meaning they have only one other processing channels (auditory or visual) working effectively at one time. This means they cannot look at the assignment on the board, write it down and still be able to focus on what you are saying. By the time they have finished copying down the assignment, they have missed your intro to that day’s lesson. This mono-channel aspect makes it hard for a student to multi-task, and by only requiring him/her to do one thing at a time, it will be much easier for the student to be focused on the day’s lesson.

* The student with Asperger’s or HFA usually takes things literally – this is part of the communication challenge. For example, if you address the class by saying “Please turn to page 12,” expecting the students to start doing the work on that page, the Aspie student may turn to page 12, and then just sit there, awaiting further instruction. Meanwhile, you may think he is being a smart-aleck, but I assure you, he is not. You need to say “Please turn to page 12 and write the answers to question 1-5 in your notebook.”

* This taking things literally means that also the student may not understand all the nuances of language or social customs, what we call ‘hidden curriculum.’ Think of what it is like as a foreigner in a new land and how they need to be explained the local customs- that is what it is like for a person on the spectrum.

* Students on the spectrum are often described as being obsessed with a particular topic or subject, for example, space travel, buildings, certain types of music, transportation. Actually, being passionate about a topic shows an interest in learning. If you know what your student is passionate about, you can relate your lessons or subject in some way to his area of interest and your student will excel.

* Many students on the spectrum are overly sensitive to noise and crowds, making transition times between classrooms difficult. By allowing the student to arrive or leave a few minutes early or late, you will make it much easier for that student to arrive to class less stressed, and ready to focus on the lesson.

Students with Asperger’s Syndrome or HFA are usually very bright and eager to learn. Hopefully these tips will help the year be a more productive one for you and your student.

Autism: It’s A Family Thing

March 26, 2010
The Sicile-Kira Family

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. Continue reading »

What Can Be Done to Help With Sensory Processing Challenges?

March 15, 2010
Headphones

Auditory Integration Training / Photo Rebecca Sicile-Kira

In my last Psychology Today post I discussed sensory processing disorder, and received  comments and  questions from readers.  I had mentioned an article  in The Boston Globe that  mentioned that  a  group of  professionals and parents  was  lobbying to get sensory processing disorder included in the next Diagnostic and Statistical Manual of Mental Disorders. Reader Dr. Joshua Feder wrote in to give us the link where people can provide input:  “Remember, the public commenting on the upcoming DSM-V is still in process and the addition of SPDs is in flux, so if you think it is important you can make your voice heard. Go to http://www.spdfoundation.net/dsmv.html to learn more!“

Sensory processing challenges is a hot topic at autism conferences  and this provides me the opportunity of asking adults on the autism spectrum  what we could do to make the sensory aspects of life easier for them, as well as children who may be unable to discuss what they are sensing. I have written up the answers in my book, 41 Things To Know About Autism, and I am mentioning some of them here. Continue reading »

What is Sensory Processing Disorder and How Is It Related to Autism?

March 3, 2010

Earlier this week,  there was an article in The Boston Globe about sensory processing disorder. It stated that a group of researchers, families, and occupational therapists is aggressively lobbying to get sensory processing disorder included in the next Diagnostic and Statistical Manual of Mental Disorders, which is currently being drafted.

Many readers may wonder, what is a sensory processing disorder?

Sensory Processing Disorder (SPD) is a neurological disorder that causes difficulties with processing information from the five senses: vision, auditory, touch, olfaction, and taste, as well as from the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SPD, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SPD; the difference is that information is processed by the brain in an unusual way that causes distress, discomfort, and confusion.

Continue reading »

I am an adult and I think I may have Asperger’s Syndrome (AS). How and why should I get diagnosed if in fact I do have AS?

February 2, 2010

This article originally appeared in The Autism Advocate blog at PschologyToday.com

Usually I write mostly about children or adolescents on the autism spectrum. However,  I’ve been getting quite a number of emails lately from adults wondering if they have Asperger’s Syndrome or not, so I decided to share some information from my book to be published March 25, 41 Things to Know About Autism. Asperger Syndrome (AS) is a high functioning form of autism that has only been an official diagnosis since 1994. Adults with AS who seek help with challenges they face are sometimes misdiagnosed with depression, bipolar disorder, or other mental illnesses. It is important that adults questioning whether or not they have AS, seek the services of a professional experienced in assessing AS in adults (see resources below).

If you are an adult with characteristics resembling AS, why does it matter if you get a diagnosis or not? If you are functioning well and have a job, and are happy with the life you have, then there is no reason to get a diagnosis. On the other hand, if you are struggling in important areas in your life, a diagnosis can provide a framework for understanding and learning about behavioral and emotional challenges that have seemed unexplainable until now. Although challenges in sensory integration (the ability to organize sensory information for use by the brain) are not considered diagnostic criteria, I have yet to meet a person with Asperger’s who does not have a sensory challenge of one kind or the other.

Some areas of difficulty where Asperger’s Syndrome could possibly be a factor:

  • Do you have a tough time making and/or keeping friends, and don’t understand why? Or perhaps your friends are only interested in you when you’re engaged in an activity or interest that you share, but you have not built a personal relationship.
  • Are parties not your thing because you feel uncomfortable or overwhelmed? Social events are a great way to meet people and they can be essential for business, dating, and even marriage. But if you are uncomfortable because you are unsure of what to wear, how to start conversations, you have a hard time reading body language, then these supposedly fun events can be torturous.
  • Do you avoid social events because you can’t hear the person next to you over the hum of the crowd, you don’t like the touch of shaking people’s hands or having people pat you on the back? Do you a problem focusing on what people are saying while looking at them?
  • Have you ever met someone special that you wanted to get to know better, but didn’t have a clue as to how to go about asking him /her out on a date?
  • Has someone you are very fond of pointed out certain behaviors that drive them crazy and suggested that you might have Asperger’s Syndrome. Maybe there is something to their suggestion.
  • Do you have a passionate interest in a certain subject or topic? Perhaps you’ve been called obsessive but you think you’re just very interested in one incredibly fascinating subject matter. This passionate topic could help you in other areas of your life, if only you knew how to use it.
  • If you are a college student , do you have trouble keeping up with coursework and finishing a degree? Perhaps you could use some help in getting and staying organized and planning your time.
  • Do you have trouble in getting and keeping a job that reflects your abilities even though your credentials look great on paper? It could be that you are very talented but don’t have a clue as to how to do the sell your self during an interview. Maybe the office politics are just something you don’t get, so you are routinely passed up when it comes to promotions.

Why you should get a diagnosis, if indeed you do have Asperger’s Syndrome:

  • You can begin the process of learning to live more adaptively with an Asperger’s brain.
  • Getting a diagnosis may help you find the strategies you need to be more successful in the areas where you are facing challenges
  • It may also help others in your life understand why you are the way you are, and respond to you differently.
  • There is a whole community of people who get who you are, how you think, how you feel, and that you can share experiences with.
  • There are autism and AS support groups out there (on-line as well as in person) who can help you in many ways so you don’t have to feel isolated and figure everything out for yourself .
  • You may be eligible for service services in areas of need thanks to having a diagnosis – perhaps help with finding a job or a place to live.

How to find out if you have Asperger’s Syndrome or not:

  • Typically you need to see either a clinical social worker, a licensed professional counselor, a psychologist, a psychiatrist or neuropsychiatrist. It is important to see a professional who specializes in autism spectrum disorders or Asperger’s Syndrome, who is familiar with Aperger’s Syndrome in adults.
  • One way to find the right person in your geographical location is to contact The Global and Regional Asperger Syndrome Partnership (GRASP), http://www.grasp.org/and the Autism Society of America (ASA). These organization may have chapters in your area. If not, they can provide you with the names of professionals who would know someone to refer you to, in your geographical area.
  • if you know parents of children with autism, ask them about the professionals in your area familiar with autism. If those professionals cannot help you, they will refer you to someone in your area familiar with AS in adults.

To find out what some adults have to say about growing up with AS, read Autism Life Skills.

I think my child may have an autism spectrum disorder (ASD). What do I do?

January 21, 2010

This article originally appeared in The Autism Advocate blog at PschologyToday.com

Getting a diagnosis – if indeed a child has an autism spectrum disorder (ASD) – as early as possible is important because research shows that early intervention is the best intervention. Yet, not all pediatricians recognize the early signs of a possible ASD.

Although diagnosis rates of autism are up, this does not mean that all doctors or medical professionals are aware of the different signs of autism in different types of babies and toddlers. A diagnosis is made by observing the behavioral characteristics in three areas : communication, social interactions, and imaginative play or thought. As there are no physical characteristics that are shared by those in the spectrum, and there is a wide range of abilities and disabilities – it is not always easy to identify.

Continue reading »