Friday, June 22, 2007

Is It Autism?

The following is a glimpse back in time, written when our family was just starting our journey into Autism --- April 2005.

Is it Autism?

“We can’t diagnose,” is the answer to the question it has taken me days, weeks, months to build up the courage to ask. The question is perhaps the most important one I have uttered in my 42 years. Certainly, it is the most important question I’ve posed in reference to one of my three children. The response to this life-altering, possibly life-shattering question is a non-answer.

Prior to the meeting, I had braced myself for what I might hear. There is so much truth in the saying about not asking a question if you are unprepared to hear the true answer. I knew that a “yes” would have indeed made me crumble within, and that a “no” would have brought with it profound relief. But, the unexpected, the non-answer, was not anything for which I was prepared, and it left me numb and afraid, alone and confused.

In no way do I intend or wish to place blame upon these Early Intervention professionals for being truthful about their inability to answer my question. They have been wonderful to my child and to me, and I understand that legally, no one who works with children can officially diagnose autism without a medical degree in hand. So when I (and I assume many other concerned parents) approach them with, “Is it Autism?” they must answer the non-answer required of them, and then help us and our children in the best way they can.

However, as the mother of a beautiful, sweet, loving two-year-old girl with white-blond hair and sparkling blue eyes, who is at the least language delayed, and perhaps communication and socially delayed, or possibly worse, I’m actually looking more for their opinions, and yes, maybe their reassurance, after eight months of observing and working with my daughter, than an actual medical diagnosis.

“What do you think?” is what I’m searching for, struggling with the fact that they can’t, even if they want to, tell me their opinions, beliefs or thoughts specific to this disorder, this possible life sentence, as it pertains to my child, my little girl. I assume, though do not know for certain, that the state or whoever mandates what can and cannot be said to parents, must fear lawsuits if employees make certain inaccurate or misconstrued utterances.

Our Concern

Thinking back, I believe that I was somewhat concerned about our daughter’s development when she was about a year old. Becky was always quieter than my other two children had been. She was somewhat listless, and content to play alone with her nesting or stacking cups. She took several months to really begin to walk “smoothly,” without appearing to be slightly off-balance. People would even comment about the “cute” way she had of toddling, months after she had taken her first steps.

Although a happy, smiling child who laughed a lot, she did not interact with people the way we expected. She didn’t respond when her name was called, though she’d react to other sounds, so we did not believe that she had a hearing problem. She did not pay attention to things that you might expect a toddler to notice like our two cats that were always around her. She ambled around them as if they were not there, whereas we were always used to cats running for the hills in fear of their very lives when approached by other children. The felines knew they had nothing to fear from Becky.

Current Services

Currently, Becky receives two home visits a week from Early Intervention providers, and she attends a morning playgroup once a week through the same program. She qualified for these services over six months ago, after I expressed concern to her pediatrician that she was not speaking or communicating in quite the way I expected she would. At eighteen months old, she regressed in her babbling and interactions from what she had been doing at one year. We no longer heard “da da” or “ba ba,” she stopped responding to her name, and games of peek-a-boo were a thing of the past.

Our pediatrician encouraged us to call the local Early Intervention Program to have Becky evaluated. Three professionals promptly visited our home, observed Becky at play in her familiar surroundings, quickly determining that she did indeed have a developmental delay. They welcomed us into their program which works with children, as deemed necessary, up to their third birthday.

We are extremely pleased with her progress thus far. Besides being delightful and funny, Becky is better able to interact with others, attend to partner or group play for a longer period of time, approximate a few words, sing along with songs, and use limited sign language.

Early Intervention Professionals work with Becky in our home environment so the she is comfortable, at ease, and, therefore willing to interact and learn. She has a lot of fun during their visits and learns through play. The visits are valuable to me, also, because, as an observer or participant, I learn ways to help my child. These Occupational and Speech Therapists have a wealth of knowledge and are available to answer questions and give advice.

The Waiting Game

At the suggestion of the Occupational Therapist, we made an appointment several months ago with a local Infant/Toddler Clinic to have Becky’s overall health evaluated. These doctors are the appropriate professionals for diagnosing Autism in very young children. But, since her appointment with this clinic is still four months away (there is a very long wait to get an appointment here) her third birthday will be just around the corner.

At three years old, the current services to which Becky would be entitled transfer from state mandate to that of our home town. If she does indeed have Autism or Pervasive Development Disorder (PDD), valuable time and services will be lost by waiting these next few months.

After the frightening non-answers to my questions about Autism, I was informed about some other evaluation options available to us. A study of very young children with Autism and its effects on their families is being conducted at Boston University. After briefly researching this Child and Family Project and contacting the sponsors, my husband and I have decided to take part. Within the next month, we’ll be interviewed at our home and fill out extensive written questionnaires pertaining to Becky’s overall development and her abilities up to this point. Becky will be observed and videotaped at play during a child visit to the university.

After we’ve completed these three aspects of the study (the parent interview, the questionnaires, and the child visit), the sponsors will evaluate the data and provide us with a preliminary diagnosis. If she is found to have Autism, we will participate in the study for the next four years to help researchers gather enough data to draw conclusions about the effect of Autism on families.

The purpose of seeking a diagnosis for Becky is two-fold. For the researchers, a diagnosis means another child for their study, of which they currently have 75, with the intention of including 300. The more children studied, the more accurate the data and conclusions, and hopefully, more knowledge and understanding of this, as yet mysterious, disorder.

For our family, a diagnosis entitles Becky to a much wider array of services to help her learn to communicate well. As I watch my bright, funny, sweet toddler at play, I know that I will do for her whatever is necessary so that she may have a happy, meaningful, successful life. The service programs through EI are intended to help children under three year’s old work toward their potential at a much earlier stage in life than most children with Autism have in the past.

This more intense “earlier intervention” is seen as a huge step in assisting young children with Autism. As I understand it, the professionals believe that early, high-quality, individualized education greatly increases a child’s chance of making significant progress toward a higher life potential.

What to Wish For

In most situations, as a parent, I would wish for the answer regarding any type of diagnosis for my child to be negative. In this case, however, I don’t actually know what to wish for. If Becky is found to be on the Autism Spectrum, I will have hope that her communication skills will improve through professional intervention, parent education programs, and lots of time and hard work (and play).

If, however, the professionals determine that she is not in these categories, we are left with the question, “What is wrong and how do we go about helping her?”

In addition, although no one has yet given a definitive diagnosis or opinion as to the cause of Becky’s delay, it is apparent to me, through what I have read, observed, been told, and been advised to do, that Autism is a strong probability. And, since the people I have come to trust, who work daily with children who are on the Autism Spectrum, appear quietly concerned about my daughter, I will continue researching and asking questions until the answers start to make sense.

1 comment:

Anonymous said...

Our family is in the same boat. I believe we maybe a year or so ahead of your situation. You are doing everything correct. Your beautiful daughter is very lucky to have you!

Keep doing what you are doing... the answers will come but at least your top everything!