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.

It’s been one of those days -  support person can’t come in because her puppy is sick and I’ve got tons to do.  Meanwhile, I find suspicious stains and matter on the floor and rug, and I’m not sure who is responsible for them (we do have a cat and a dog….). It takes a good hour to clean it up, because the matter  somehow  ended up on Jeremy shoes, which of course he then tracked all over the house.  I’m still finding stains hours later. Jeremy edits his homework assignment, but I can’t seem to upload it on his college blackboard assignment page. I get an extremely rude email from a person (who could use some tips from Miss Manners) demanding immediate  information  about a Taskforce I am co-chairing  and a California insurance bill (Just FYI – I’m not in charge of updating the Senate Autism Committee’s website where the Taskforce information is supposed to be posted, in case anyone was wondering… ).

In the middle of all this, Jeremy walks by where I am sitting as I try  to  resolve a problem on his computer. He gently drops the above postcard (which is usually taped up on our refrigerator) near me. Yup, Jeremy, it’s one of those days. Thanks for acknowledging it.

But there’s always tomorrow…..

This past week, I finally made it to the RoadRunner store to buy a pair of running shoes. I have not been getting my normal amount of exercise (walking or elliptical, plus core strengthening) and I was feeling it. Lethargic, less energy and putting on weight. And when I did exercise, my sneakers were so worn I was worried about my back and left right knee (go ahead and laugh if you are under 35, you’ll soon understand what I’m talking about….). I knew it had been a while since I had bought a new pair – but when I got to the checkout – I was told my current sneakers were purchased in July 2009. YIKES!

How did I let exercise – the one thing that keeps me healthy and sane (OK, maybe not sane but at least behaving appropriately in public settings) slide off my schedule?

Upon reflection, what has happened in the last two years is that I had put myself on the bottom of both the “scheduling support people for Jeremy list” and  the “to-do list.”  Parents and educators,  you know what I mean – you all do it. When you have special needs children your life can get swallowed up by your child’s or student’s needs.  I have been squeezing in my writing (ie paid work), my socializing (ie refreshing my social skills) and my exercise (ie keeping healthy) around Jeremy’s needs and everyone’s schedule.

I often tell parents and educators  during my presentations that they have to take time for themselves. Like the cabin crew tells you on the plane – you have to put your oxygen mask on first before you can help anyone else. Same goes for real life. If you don’t take care of yourself, no one else will, and you won’t be  any good to anyone else. So please, do as I say and not as I  have been doing.

Now, I’m putting my priorities first on the schedule. Everything else is secondary. (At least till the new shoes get a little mileage on them).

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.

When my father passed away in 2007, we moved my mom to a skilled nursing facility near our home. Caring for my son Jeremy and caring for my mom—one affected by autism and the other by Parkinson’s—I’m continually reminded how similar their brain processing challenges are. One glaring difference, however, is that my son is gaining in skills (albeit slowly), while my mother is losing them.
As an older parent (I won’t say how old – a lady is entitled to her secrets), I’m now sandwiched between caring for my children, and caring for my elderly mother. The balance of time has shifted, and now it is my turn to look after Maman who once looked after me. In the trunk of my car I carry a change of clothes for my son and adult diapers for my mom.

Both Jeremy and Maman require high levels of support and are nearly the same in terms of stress, worry, and time commitment. Soon after moving my mom down here, I was overseeing my mom’s caretakers, as well as my son’s in-home support staff. That pile of insurance papers I already hated filling out for my son looked small in comparison with all the paperwork following my dad’s death and all that needed to be done for Maman. The number of phone calls I had to make to health professionals, therapists and agencies suddenly quadrupled. And then there were the Interdisciplinary Care Plan meetings in regards to Maman and the Individualized Educational Program meetings for Jeremy.

Sometimes, it feels like I’m not doing right by either of them. Meanwhile, I still have my work to do, with deadlines looming. “Squeeze as much as you can into a 24-hour day” seems to be the mantra around here. Because of course there are the financial worries that having a “Jeremy” entails.

The other day I took Jeremy to visit my mom. When we got there, Maman was sitting in the communal living room, where there is not much living going on. Maman was slumped in her wheelchair, staring blankly at the TV screen. We walked in and greeted her, but she did not respond. Maman was ignoring us.
“Maman, what’s going on?” I asked.
“I’m mad because you didn’t come yesterday,” she replied, refusing to look at me.

The day before, Jeremy’s tutor had called in sick, so I’d had to stay home and supervise Jeremy getting his homework done. Maman doesn’t get that sometimes I have to choose between her needs and my children’s needs. Tough situation to be in, but it is the reality of those of us in the sandwich generation.

I apologized for my absence, but Maman was still pouting. “And Monica didn’t come today.” she stated. Monica is my sister in L.A., a two-hour car ride away.
“Maman, Monica is coming tomorrow, Friday. Today is Thursday. But I’m here now, do you want to play cards with me?” I asked. Maman loves to play cards.
“Non,” she replied.
“Fine, then I’m going to play a game of solitaire by myself.” I pulled out the cards and set up the game to play. Maman didn’t react at first, but after I played a few rounds, she slowly moved her hand, picked up a card and moved it to where it belonged. Good, I thought, I got her interested.

Meanwhile, Jeremy sat at the table, quietly stimming with one of Maman’s little stuffed animals. She keeps them in a bag hanging off her wheelchair, along with the playing cards and a book. As he was stimming, he rocked, and his chair started to slide backwards. Not a good thing considering that very old people in wheelchairs were right behind him. I asked him to budge, but he ignored me, so I got up and pushed his chair back in closer to the table. I sat back down, and Maman was back to staring at the TV screen. I tried to get both Maman and Jeremy interested in the card game, but nothing doing. I pulled out one of Maman’s Paris Match magazines—they both like to read those—but they just sat there unresponsive, each in their own little world. I continued my game of solitaire. There I was with two of my closest family members, and I had never
felt so alone.

Back home, there was a reminder email from Rebecca’s high school about an upcoming meeting. This is Rebecca’s senior year, and there are all these things I am supposed to be doing in order to help her choose, apply, get into, and pay for college. Things are much more complicated now than when I was in high school. Although I know all the ins and outs of special education, I am at a loss when it comes to college prep, and I feel like I am already behind in helping my daughter to navigate through all that she should be doing. Gosh, have I been spending so much time taking care of Maman and Jeremy that I have seriously messed up my daughter’s future? Something else to worry about, and now I will have to skip a visit with Maman to attend this meeting. It’s tough having to choose between being there for your child and being there for your parent.

Every one of these people whom I love and cherish requires and needs my attention. Sometimes I feel overwhelmed and I think, “How did I get here? How did I become the primary caretaker for so many needy people?” And of course just asking the questions makes me feel guilty.

Then it hits me. I don’t want to rush through any of this.  I want to savor the next few years. Spending time with Rebecca is a joy; I don’t want to miss a minute of my teenage girl’s transformation into a young woman. She will be out of the nest before I know it. Maman has only a few years left, and I want to be there for her the way she was for me when I was little. Jeremy is evolving into adulthood, and it is gratifying to see how mature he is becoming. I don’t want to miss a minute of any of it.
This sandwich generation stuff is tough. But soon, my husband and I will be all alone and I’m not sure I’m ready for that. I’m lucky to have all these people to care for, needing me, surrounding me. My plate is very full, and yet that is what gives my life the richness and flavor that makes it worth living.

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.

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).