Diagnosing Autism

Seattle Children’s Hospital Autism Center

At the end of August, almost 3 ½ months after the speech assessment, we got a call on a Sunday, for a Monday appointment at the Autism Center.  At that appointment, Dr. Charles C. got some history from me and with the various assessments and his observation of Joshua, gave him the provisional diagnosis of Autism.

“The Squeaky Wheel”

After our initial appointment with Dr. C., I was given the impression we would be seeing a psychologist in order to work on getting Joshua’s official diagnosis and help with some of his behaviors.  This is where the Autism Center began to act “autistic” in my opinion.  I had to truly be a squeaky wheel as when I called to make the appointment, I was told they would call me to make the appointment.  They never did.  Now, to be fair, they just opened up this summer and there was a long waiting list, however, it was never clear how long the wait would be.  Dr. C. wanted to see us back in 3 months and gave the impression that additional evaluations would be done.  The PLAN, involved Joshua having lab studies done, which included chromosomes and fragile X DNA studies.  I never got the results of those until the follow up appointment and the blood test was a whopping $2000.  We were supposed to be referred to Psychology to complete additional evaluations including as appropriate, a ADOS (Autism Diagnostic Observation Schedule) testing.  This test didn’t happen without me calling repeatedly.  At first, as I mentioned, I was put off.  The second time I called, I was again put off being told there was a 600 person wait list, which I thought we had already weathered.  The third time I called, and this is the end of September, now, I informed them that Anita W. had informed me she could get the testing started as she was on the Autism Evaluation Team.  Thank the good Lord for her offer, back in May!  They then said they would contact the Speech and Language Services and I should hear back from them by the end of the week, or to call them directly.  I didn’t hear back from them and when I remembered to call, it was already 5 PM so I thought I’d wait until Monday.  Monday, I completely forgot due to all our activity in the house with home schooling, etc.  Two weeks later, mid October, now, I remembered and found Anita’s direct number and called her.  She graciously called back that day and we had Joshua’s ADOS scheduled for November 9th.  Anita encouraged me to call the Autism Center and discuss the communication break down as I should not have been put back to the end of the line after our initial appointment with Dr. C.  My concern was not only for Joshua, but for the countless other parents with Autistic kids, who would have to continually call back to get an assessment completed.  That I did and I did my best to express my concern that the Autism Center had some major break down in communication.  Not many parents would be as persistent and feel easily overwhelmed.  From what was shared with me, many don’t do anything until their child is ready to start school.  Early intervention is the key for kids to improve and parents need all the help they can get.  I did receive a nice Autism Center Family Resource Notebook, however, despite my experience in Children’s Mental Health, it was still overwhelming and difficult to know where to start.

November 9th came and I took Joshua for a 3 hour assessment with Anita.  I was pleased that he acted completely, himself.  Anita got to see him for who he is.  He had fun with her, but displayed all the symptoms that he had that places him in the Autism spectrum.  Was I devastated?  No.  I was impressed by how quickly the turn around time was for Anita to get the evaluation sent to me, as I got it within a week!  Anita had a number of recommendations and encouraged him to be in a full day Developmental Pre-school.

“Research has shown that early intervention for young children with an autism spectrum disorder is most effective with at least 25 hours of intervention per week, 12 months a year (See the Recommendations & Conclusions chapter from the National Research Council’s Committee on Educational Interventions for Children with Autism, published in the book, Educating Children with Autism, National Academy Press, 2001).  This can include a combination of school programs, speech/language therapy, occupational/physical therapy, and one-on-one behavioral therapy in a structured and/or play setting, as well as other structured activities where the child’s participation is facilitated and expanded by an adult knowledgeable about autism spectrum disorders.”

This was a hard one for me, as I drove home with Joshua.  I was teary eyed, thinking of sending my little 3 year old off for 6 hours a day, or so, for developmental pre-school.  I home school, after all.  Crazy as it sounds, but I like my kids and enjoy being with them (most of the time).  Then, the Lord brought to mind the story of Samuel in the Old Testament.  He was about 3 years old when Hannah gave him to Eli, to be trained as a priest.  The Lord reminded me that Joshua was His, first and I needed to not be selfish but to do what was best for Joshua.  It is still a struggle, but that battle has just begun with the school district.  Thus far, Joshua has speech once a week, and occupational therapy as well.  I had also signed him up for Sunday School, recruiting his godmother, to switch off with me, which she gladly agreed to.  Getting the school program recommended for him was the next challenge.

What are the symptoms of Autism Spectrum Disorder and what were Joshua’s symptoms?  Well, looking at the DSM IV,  it states (Joshua’s symptoms will have a **):

299.00 Autistic Disorder

An autism screening tool must meet all three primary areas defined by the DSM-IV description for autistic disorder (#’s 1-3 under A below) to qualify for a positive rating from First Signs:

A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

(1) qualitative impairment in social interaction, as manifested by at least two of the following:

**(a) marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

**(b) failure to develop peer relationships appropriate to developmental level

**(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)

(d) lack of social or emotional reciprocity

(2) qualitative impairments in communication, as manifested by at least one of the following:

**(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

**(c) stereotyped and repetitive use of language or idiosyncratic language

**(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

(3) restricted, repetitive, and stereotyped patterns of behavior, interests, and activities as manifested by at least one of the following:

**(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

**(b) apparently inflexible adherence to specific, nonfunctional routines or rituals

**(c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting or complex whole-body movements)

**(d) persistent precoccupation with parts of objects

**B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

C. The disturbance is not better accounted for by Rett’s disorder or childhood disintegrative disorder.

So, although Joshua has problems in the 3 main areas the make up autism: communication, social interaction, and behaviors, we were relieved to discover that he was on the mild end of the spectrum and early intervention would help him succeed. We also had a lot of positives to go off of:

He is able to communicate his needs.
He has good visual problem solving skills.
He can learn by observing and imitating.
He is interested in his environment.
He has a fun, sweet personality.
Joshua is not at all aggressive.

With this “tool’ of a diagnosis, we now could move forward to get him the services he would require to make the most of the therapies available and progress to the best of his ability.

Anita did inform me that the new DSM V coming out has made the diagnosis even broader, including within it, Aspberger’s Syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).  The only good I can see that comes out of that is more kids getting the medical diagnosis so as to be eligible for services, one of the hoops one must jump through with our lovely health care system.  This will, of course, make the diagnosis even more prevalent with, more likely, Sensory Perception Disorder lumped in, as well.  Already, I’ve heard ADD and ADHD being associated with the ASD, which, technically, it isn’t, but that does bring up the over all question of what is causing these disorders in the first place?  My perception is the environmental toxins, both in our food (anti-biotics, growth hormones, additives, artificial food colors, etc.,) as well as present in the environment with cleaning solutions, chemically treated materials, etc., is affecting more than we think.  Ignorance is not bliss.  It’s health problems in one form or another.  Joshua’s autism diagnosis is a wake up call to our family and we are taking the time to get educated, make the changes that we can, and inform others in any way we can, including this website.