A MOTHER'S STORY (2): So This is Autism.

This is the second in a series of articles written by Kari, a mother of two boys, including a 10 year old son who was diagnosed with Autism (read part 1).  When Kari approached me with her compelling story, I asked if she would be willing to disclose it so that other parents could potentially learn from the path that she has taken.  I thank Kari for her willingness to let us into her life, and take us through her journey from discovery to what has helped her son thrive.

~elisabeth veltman

BACKSTORY

Over the past several years, I've had the opportunity to talk with many parents who are raising children on the autism spectrum.  We have all traveled different paths to the diagnosis, but each is a path that takes several months or even years.  I think we probably all look back on these months with a little regret that the process took so long.  Changes have been made to alleviate this problem and I was excited to have the opportunity to fill out a developmental checklist at my daughter's 18 month well-check recently.  If this had been available for Caden, I am certain we wouldn't have lost out on months of meaningful therapies.  I hope that pediatricians are becoming better at listening to parents and referring them to specialists instead of dismissing concerns.  This is the second part of the story of our journey from the first suspicion of problems until the day we received the diagnosis of autism, which took about 18 months.  

(Read Part 1:  A Mother's Story. The Subtle Signs of Autism and the Long Road Ahead)

SEEKING COMMUNITY BUT FINDING QUESTIONS

My husband and I moved from Pittsburgh, Pennsylvania to our current town in the fall of 2001. Our small town is also home to a large university, where my husband was hired as a research professor in the Industrial Engineering Department.  In 2004, when Caden was two, I still felt fairly new to the area, so I joined a group called Mothers of Preschoolers (MOPS) in an effort to meet other moms and get Caden a bit of time to play with other kids.  Quite honestly, MOPS wasn't anything that excited me.  I often found the guest speakers to be uninteresting and a bit too religious for my taste.  There was, however, one day that caused me to tune in.  The speakers were from the local branch of the Department of Health's Early Intervention program.  At the end of their presentation, I remember nervously raising my hand and asking if they thought it might be a problem that my son was over two and not yet able to answer yes/no questions.  I'm pretty sure they wanted to scream “YES!”, and I'm not exactly sure I ever heard what they actually did say because their facial expressions said everything I needed to know.  When I talked with my husband about it later, he talked me out of calling.  There will be more on my husband's feelings and evolution in upcoming articles.

FIRST STEP TOWARD DIAGNOSIS

It was a few months later when the can throwing incident (see Part I) occurred in the check-out line at Wal-Mart.  I knew Caden needed help and I wasn't going to be talked out of it this time.  I called Early Intervention and scheduled them to come observe Caden.  Not surprisingly, he qualified.  I found it strange at the time that the only therapy he received from them was occupational therapy.  It didn't make sense to me that my kid who couldn't communicate wasn't receiving speech therapy, but they explained that children sometimes have sensory issues that interfere with their ability to gain language skills.  They were the professionals, so I went with it. Caden did have a lot of sensory issues.  Tags in his clothing bothered him and I had to cut out every one of them.  Loud sounds caused Caden to unravel.  Vacuuming had to be done when he was out of the house.  I couldn't use a food processor in his presence. Caden's grandfather is a football coach, and naturally everyone thought he would love football games, but he frantically pulled us out of every stadium we took him to. I'm not sure if the therapists ever came right out and said it, but they pointed me in the direction of Sensory Integration Dysfunction books and strategies.  

My husband and I utilized every tactic that was presented to us.  I read the few books that I could find on the topic.  We did dry brushing of his skin and joint compressions to help soothe him before sleep, bought him toys with many different textures, and had him sleep with a weighted blanket meant to calm him.  We saw some benefit to all of these things, but the language still didn't come.  We worked with Early Intervention for just three months because Caden aged out of the program. I wished we had started sooner, but I wasn't upset because we had a lot of hope that the next step in our journey would bring us more intense therapy that our little guy needed.

SPECIAL EDUCATION EVALUATION

When Caden turned three, the next step was having him evaluated by the special education department of our local school system.  The school evaluation involved testing by four different professionals; a speech therapist, an occupational therapist, a school psychologist and a special education teacher.  It was during this testing process that I came to realize just how gifted some teachers and therapists were, while others left me wondering how they continued to be employed.

The speech therapist met with us at our local elementary school, during summer vacation.  She was very friendly and allowed Caden to play with all of the toys on the shelves as she completed her observations.  This certainly made it easy on everyone.  Caden was happy, therefore cooperative. We finished the testing with no drama at all.  

Later that week, we met with the school psychologist.  We met in the same small room where we had met with the speech therapist.  Caden walked in, spotted the toys on the shelf that he had enjoyed previously and when he attempted to get one, I was told that he wasn’t allowed.  I explained to her that he had been allowed to use them during our other testing, hinting that this inconsistency would cause him to unravel, but she remained rigid.  It should have come as no surprise that my child, who couldn’t understand much spoken language, flipped out.  Yet, the psychologist was incredibly flustered.  She continued trying to test him in that room for at least thirty minutes before finally moving to another room, at my request, where there were no toys. 

Testing went a little better once the distraction of the toys was removed, but it was still ridiculous.  The woman had no tolerance for my son’s inability to complete her test.  Shouldn’t a school psychologist, who routinely tests children for special education qualification, be used to working with children like Caden?  Why was she so harsh?  Why did it seem as though she was about to have a meltdown that could rival one of Caden’s?  I expected to walk into that testing session and meet a person who could make my child feel at ease.  I expected to meet a person who was a natural with kids.  Instead, we were required to endure hours with a woman who seemed to have no idea how to interact with my son.  I maintained my composure while we were there, but was furious on the inside.  To this day, I have no idea how or why she was working as a school psychologist.  She clearly had no understanding of how a little mind works.  She should have been one of the first people to step up and refer us to a specialist, but instead, she never even submitted a report.

Luckily, the next two tests were conducted in our home.  The occupational therapist was a woman we had met during Caden’s short time in the Early Intervention program.  He was familiar with her and she knew most of his abilities.  The special education teacher had the longest set of tests to conduct, and she happened to be a neighbor and good friend of mine.  She understood Caden, took her time with him, and came back numerous times to get the job done.  She made the testing fun for Caden, and he actually enjoyed part of her testing because she was looking at gross motor skills which involved a lot of playing outside.

SPECIAL ED TESTING RESULTS

At the end of all of this testing, my husband and I met with a special education supervisor from our school district, along with the speech and occupational therapists and the special education teacher who performed the testing.  I have no idea why the school psychologist wasn’t present, but I wasn’t interested in seeing her again anyway!

In order to be eligible for special education services, a student had to display a 25% delay in at least one area of development.  Caden’s results indicated at least a 25% delay in fine motor manipulation, receptive communication and expressive communication.  The communication tests revealed that his abilities, though he was three, were more like those of a child 18-24 months.  Caden qualified for services and I was excited that he would be receiving speech therapy in addition to the occupational therapy he had already been receiving.  Plus, all of these services would be delivered while Caden was in the preschool we had chosen for him to attend three days each week.  He was also assigned a special education case manager, who would visit him at his preschool a few times each week and set up the accommodations that were set forth in his plan.
 
It all sounded great, but, there wasn't much progress.  And, because the therapists were visiting during preschool hours, my husband and I had little interaction with them.  There was a communication log that we could look at when we picked Caden up each day.  We attempted to correspond with the therapists, especially the speech therapist, begging her for some ideas of strategies to incorporate with him at home.  Her advice was less than stellar, “Try to get him to say 'yes' and 'no'”.  No kidding.  We had been trying for years.  We needed specific ideas.  She had none.  She was useless.

MY REALIZATION - "THIS IS AUTISM"

About three months into the school year, my frustration levels were mounting.  Caden's temper and lack of communication skills were becoming more difficult.  I decided to do some searching for answers on my own since his therapists were making no progress with him.  I remember one night, when my husband was out of town, I found some time to investigate on the Internet.  I was specifically looking for tips about how to improve verbal skills for a child with Sensory Integration Dysfunction. 

It seemed like every time I did a search, I found myself on a website that was associated with autism, or had an advertisement for an autism-related service.  This happened every time I tried.  And then it hit me.  This is autism.  I can almost feel the sinking feeling in my stomach as I sit here reliving that moment.  Ugh.  And, remember, my husband was out of town and was working late so I couldn’t seek comfort from the one person I wanted to talk to.  I knew my husband would calm me down, but when I couldn’t get in touch with him, I immediately picked up the phone to call my sister.  She was in college and working toward her degree in Child Development.  She would talk some sense into me, right?  Wrong.  Her response was more along the lines of “I've been waiting for this phone call for a long time”.   As it turned out, my sister and my parents had been suspecting autism for months, but hadn't told me because they were all busily educating themselves so they could provide us with support when the inevitable realization occurred.  I can't imagine how hard this must have been for them, but in retrospect, it was the best thing they could have done for us.
 
By the time I talked to my husband that night, I had already made up my mind to schedule an appointment with Caden's pediatrician immediately.  I felt awful sharing this suspicion with him when he was so far away.  I read through the list of symptoms and so many described our little boy.  Some of the symptoms that we couldn't deny included:

    1.    Caden still didn't point, nor could he follow or find objects when we pointed toward them.

    2.    He didn't play with other kids,

    3.    He couldn't ask for help or let us know when he had a basic need such as thirst or hunger.

    4.    He had unusual attachments to strange objects.  I specifically remember that he went through a phase at this time where he had to be holding a circle-shaped toy for comfort.  He didn’t attach to something soft like a blanket or a stuffed animal, but rather a stacking ring or round puzzle piece.
 
    5.    He had intense fears of strange things like riding in elevators.

    6.    When watching TV, he would stand very close, with his head turned to the side and be mesmerized at the objects moving in his peripheral vision.
 
    7.    And, while he had some speech, it wasn't functional speech.
 
Combining all of these symptoms with the sensory issues we already knew he had, it seemed like a sure thing.  Autism.

DIFFERENT EXPERT OPINIONS … AGAIN

Caden's pediatrician had a different opinion.  We presented her with our concerns, after which she asked Caden a few simple color and shape questions.  When he was able to answer correctly, she told us that we were just being “over-reactive, first-time parents”.  While I should have been insulted with her condescending tone, I was elated.  This doctor just told me that my kid wasn't autistic!  She said to be patient and stick with the therapies because she thought we were doing all the right things.
 
The months rolled by and I still found myself looking for support and advice.  This led me to the Parent Resource Center of our local school system.  This very small staff of two parent advocates offered advice and loaned out reading materials, both of which helped parents better navigate the crazy life of raising a special needs child.  I visited their office, met the director, and checked out a few materials.  I was invited to a "meet and greet" that  they were hosting at a local fast food restaurant.  This seemed like a good way for them to talk with me more, meet Caden, and introduce me to some other moms who might be having the same struggles.
 
Unfortunately, Caden wasn't playing along with the plans.  It's likely that he found the indoor playground, and the kids in it, to be overwhelming.  He took to such a tantrum that the volunteer from the Parent Resource Center had to help me get him to the car when it was time to leave.  Taking Caden out was becoming nearly impossible for me to manage on my own.  Add it to my list of things I was incapable of doing with my child.
 
My confidence was basically nonexistent by this point.

UNQUALIFIED OPINIONS & THE AUTISM UMBRELLA

A few days later, that parent volunteer called me at home and asked if there was anything she could do to help me.  I told her my concerns regarding the lack of progress Caden's therapists were making with him during preschool.  She asked if it would be okay for her to observe him in that setting and I agreed.  I wasn't sure what would come of that observation, but I really just wanted someone to validate my concerns.  I was getting to the point where I thought maybe I was just expecting too much.

Following her visit, the parent volunteer called me and asked if she could meet with my husband and me at our home the next day.  She came while he was home for lunch and spent just a few minutes with us.  During these few minutes, she showed us a diagram that had a drawing of an umbrella. 

The word “Autism” was at the top and at the bottom were all of the different labels that fall on the autism spectrum including:

    1.    Autistic Disorder

    2.    Asperger’s Disorder

    3.    Childhood Disintegrative Disorder

    4.    Rett’s Disorder

    5.    Pervasive Developmental Disorder/Not Otherwise Specified

She kept saying “I'm not sure where Caden belongs under this umbrella, but he's on here somewhere”.  My husband and I quickly got defensive.  Who was this woman?  What qualified her to make this diagnosis?  She couldn't be right because Caden's pediatrician said he was fine.  We were pissed!  And she left.  This was a very good decision on her part.  My husband and I barely had time to process and discuss what had just happened because he had to leave for a meeting at work.  I have no idea why she thought it was appropriate to show up at our house and drop that kind of bomb during my husband's lunch break.  Once again, I found myself alone, dealing with the emotions surrounding the possibility that my son had autism.

I was furious at the time because of the unsolicited opinion that the volunteer offered.  I had only asked her to provide an opinion regarding the quality of the therapy Caden was receiving.  Her blunt delivery and lack of professionalism were completely unsettling.  Regardless of the fact that I had thought the same thing, this woman was not qualified to make such a concrete statement regarding my son’s condition.  If she had come in and asked if we had considered that Caden might have autism, we would have told her that we had.  We then would have told her that our pediatrician said that he didn’t.  She could have then explained that pediatricians often don’t have the training to recognize the subtle signs of autism and that her brief interaction with him during an office visit would not have allowed for the time to gather all of the pertinent information.  She then could have followed with suggesting we seek the opinion of a specialist.  We would have agreed.  Doesn’t that sound much less dramatic?  

THE CHILD DEVELOPMENT UNIT / CHILDREN'S HOSPITAL OF PITTSBURGH

My husband and I chose to remain focused on what our pediatrician had said, but now felt that we needed the opinion of a qualified specialist to back us in case any other unqualified representatives of the school system chose to share their opinions with us.  We talked with Caden's special education case manager about what had happened and she agreed that a visit to a specialist would be helpful, but warned us that the local Developmental Pediatrician was “label happy”.  We weren't interested in having our son labeled unnecessarily.  There weren't many choices where we live, and we didn't know where else to turn, so we made an appointment at The Child Development Unit at Children's Hospital of Pittsburgh.
 
When completing the pages and pages of intake questionnaires in preparation for our appointment, I made it a point to not mention our specific concerns regarding autism.  I answered all of the questions thoroughly, but didn't want to put any ideas into the head of the doctor.  Amazingly, this part of the story involves very little drama.  We met with the doctor for about four hours.  We answered all of the questions she had.  She interacted with Caden for a long time and then spent a significant amount of time providing us with a thorough explanation of how she arrived at the diagnosis of autism.  We weren't defensive.  We were accepting.  Her explanation made sense and her prognosis was encouraging.  A strange sense of relief came over me.  Although we lived six hours away, this compassionate and competent professional was committed to helping us find better therapies for Caden.  Despite all of the drama leading up to this moment, the diagnostic process seemed so simple.  No question about it.  Our son had autism.
   
That sense of relief was short-lived.  Within a few days, we started the long journey home and the even longer continued journey down the path to recovering our little boy from autism. 

 
Stay tuned for PART # of "A Mother's Story" next month.

ABOUT THE AUTHOR

This is the second in a series of articles written by Kari, a mother of two boys, including a 10 year old son who was diagnosed with Autism.  Kari has chosen to keep her identify anonymous to protect her son until he is ready to tell his own story. 

OTHER PARTS TO THIS SERIES

A MOTHER'S STORY (PART I):  The Subtle Signs of Autism and the Long Road Ahead

A MOTHER'S STORY (PART III): My Son is Not a "Disorder"