THE BLOG
04/22/2011 10:43 pm ET Updated Nov 17, 2011

Autism Awareness from the Families' Perspective

"I must confess that Autism Awareness Months tend to leave me cold. It seems to me that general awareness campaigns tell the public absolutely nothing about what it means to be autistic."
--A parent of a child with autism

For those of you who don't know, April is Autism Awareness Month. Advocates in the field of "autism awareness" have been very successful. Compared with many other developmental issues, the general population is very aware of this syndrome, and has been for decades.

"Rainman," the Oscar-winning film, was released in 1988. It has been followed up by others, including most recently the acclaimed 2010 film about Temple Grandin. The success has not been limited to the media. There are now over 20 states that have mandated autism insurance coverage, despite concerns that such mandates may raise the cost of health insurance for everyone.

Continued transmission of the message is, of course, critical for maintaining fundraising. But, as the comment from the parent cited above indicates, for those whose lives have been touched by autism, it is important that "awareness" extend beyond a recognition that the condition exists to an understanding of "what it means."

Much of my work involves families who have children with autism. So in trying to move "awareness" to the next level, I thought that the parents were an ideal source. What you will read below are some of the ideas that the parents of autistic children offered when asked to identify key issues that they felt the public should be aware of.

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Parent 1: the parent of a 12-year-old girl

The thing that stands out in my mind is the sensory issue. This has affected Emily in many ways, auditory as well as physical and even sometimes mental. A verbal cue can set her off, bringing back a memory of joy or upset seemingly out of context at that moment. The physical feeling of clothing needing to be tight and soft challenges me to no end. So too does her lack of unawareness of the edges (skin) of her body while seemingly at the same time being overly aware. She hugs too strong or too softly. The auditory effects are interesting as they are also her gifts in the end. She has to tag every sound the first time she hears it or she is terrified. Then sound gives her great comfort.

The realm in question: sensory sensitivities

Autism is one of five disorders considered to be pervasive developmental disorders (PDD), a group of disorders characterized by delays in the development of multiple basic functions. The term "pervasive" is critical because it captures the fact that autism affects, or pervades, every major component of development. This includes the domains of sensory perception that most of us take for granted, rarely giving them a moment's thought. If you have endured the agony of allergies such as hay fever, wheat, wool and the like, you have a sense of how the endless and often extreme sensory issues in autism can plague a child's life, placing attention, communication and a host of other skills out of reach.

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Parent 2: the parent of a 6-year-old boy

After diagnosis, the options are meager ... archaic behavioral models or chasing endless unproven and incredibly expensive "therapies" and "biomedical protocols." There is a need for a paradigm shift within the medical community and the recognition of this syndrome as a medical one, often entailing autoimmune, gastrointestinal, allergy, low muscle tone, mitochondrial issues, etc. Rather than giving band-aid type treatments, there should be a more integrative approach on the part of pediatricians.

The realm in question: extensive medical issues

Many, if not most, of the children are rarely sick in the sense of having to miss school because of flu or other illnesses. At the same time, few of them can be said to be thriving. It is common for them to have digestive problems (with significant gastrointestinal discomfort), sleeping problems (with parents often staying awake night after night), allergies to a range of foods, etc. They are also described as "picky eaters"; it is not uncommon for parents to report that the children will actively resist eating anything more than two or three foods for years on end. The effects on their health and mental energy have not been studied extensively, but nutritional deficiencies are prevalent

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Parent 3: the parent of a non-speaking, 20-year-old son

My current thoughts are stimulated by a new film called "Wretchers and Jabberers." It's about two men with autism -- one a 40-year-old and the other a 50-year-old -- who were actually "given voice" later in life by supported typing. Without a doubt, these men were able to express their own very literate and witty thoughts, with fairly good grammar, via their supported typing. The movie begs the question: what part, if not all, of the autism population may also be "given voice" if only the required and sufficient training and support were given to each one?

The realm in question: language without speech

Although the statistics are not solid, the figures indicate that the majority of children with autism either never develop speech, or they are limited to one to two word phrases. The consequences of having no speech are, of course, profound.

In the face of these dismal findings, there have been a number of uplifting reports describing non-speaking individuals being able to express significant language via writing. I myself treated a child of 10 years who had never uttered a word. However, once he learned to use a keyboard, his first spontaneous "utterance" occurred when he went to a museum and wrote, "When did dinosaurs cease?"

Although there are considerable disputes about the validity of these reports, they raise fascinating issues that may prove to be an important path for opening up the world of communication to individuals with autism.

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Parent 4: the parent of an 11-year-old girl

I was not aware until years later that my son, only 18 months older than his PDD sister, had been acting out after his sister's diagnosis. He was 4-1/2, and she was 3 at the time. My in-laws later said, "We were worried, because he was wild." I have no memory of his acting out and excess physical activity. I was hyperfocused on Diane and did not see how scared my son was. I now believe he was extra scared because he saw his parents grieving (lots of tears, anger, withdrawal). We spent time periodically with my son, but we were still not ourselves during those times, and he was too young to understand any kind of explanation. This situation is hugely important for a family to be cognizant of, and to know how to deal with, and it is not addressed sufficiently anywhere.

The realm in question: effects on family members, especially siblings

The demands of parenting, which are always difficult, increase exponentially when a child has autism. The end result is that most of the attention gets focused on the child in question, with the other siblings having to accept what is left. As with all challenges, some outcomes can be positive, as many of the "unaffected" siblings become more caring and more responsible than is typical of their peers. Nevertheless, the situation is complex and heartbreaking. Many siblings make comments such as, "I get no attention because I am normal. I would get more if I had a disability." This aspect of the situation illustrates the many ramifications for a family once a diagnosis of autism is made.

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Parent 5: the parent of a 3-year-old boy

I have years of experience in working with families with children with special needs, and yet I could not have imagined the process I would go through once I learned from the experts what was going on with my son. I had a very hard time with my son as a baby. For almost a year and a half, I had to hold him for him to go to sleep. No one told me this was abnormal -- and the serious developmental delays didn't show up until he was 3-1/2. Once I learned what was going on, I felt so badly that I didn't know how he was earlier -- I would have been more patient ... done more to help him.

The realm in question: early diagnosis

There is, fortunately, considerable focus on the issue of early diagnosis -- and following that, early treatment. However, consistent with this parent's comments, most children are not diagnosed until the second or third year of life. By then, the child has had innumerable experiences that make life difficult and unpleasant. During those times, as well, the parents understandably feel at a loss as to what to do, and they feel that they are failures as parents. Community resources to help at this time are minimal, and for the most part, families are left to cope on their own.

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Parent 6: the parent of a non-speaking, 13-year-old boy

I think the general public does not truly understand what autism really is. Most people think of "Rain Man" or "Temple Grandin," so they think all autistic people are savants of some kind or have some special talent. They need to know that it is about the behaviors. They need to know how hard it is for families and how difficult it is for us to be able to do the simplest things that most people take for granted, like going to the dentist, the movies, out to dinner, parties, etc.

It took us a long time to realize we had to stop focusing on the obvious autism traits, such as Andy's lack of speech, and instead look at behaviors. For Andy, learning to control himself has been key to his life improving a hundredfold. When he had little ability to control his behavior, his life was very limited. Since he has become more in control of his behavior, his autism has become much less of a disability. School vacation has just started, and rather than feeling dread, I am actually looking forward to it. This would have simply been unthinkable a few years ago.

The realm in question: behavioral control

As this parent's comment indicates, severe difficulties mark the social behavior of children with autism. They stem from many forces: physical discomfort that can make them tense and miserable, the absence of language needed to communicate with others, compulsions that drive them to do socially inappropriate behaviors, patronizing views of the community that believes expectations of control are unrealistic, etc. As a result, behavioral problems haunt their lives. The estimate is that 90 percent of individuals with autism cannot lead independent lives as adults. This includes even those whose language and intellectual skills allow them to go on to college. In other words, the vast majority need care for their entire lives.

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A Closing Note

The parents whose comments you have read are amazing people. Daily, they face challenges that are overwhelming, yet they maintain an unbelievable commitment to their children. At the same time, they are totally cognizant of the huge challenges that this syndrome imposes. Hopefully, we as a society can be willing to see these challenges, as well. As one parent commented, "The numbers of children with autism has been steadily and dramatically increasing. Society is ill-equipped to handle a generation of adults with autism, and this is an issue of which we are soon to become painfully 'aware.'"