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Timeline of a Diagnosis

Repost of Autism blog website: Timeline of a Diagnosis (original posting June 2006)

Boy: healthy pregnancy, c-section birth, no issues at birth, 8 lbs, 20 in

0-12 months: No indications of anything abnormal. Rolled, cooed, smiled, laughed, crawled, walked on time if not early. He was a happy healthy infant. He was responsive and alert.

12-18 months: We didn't see more than a few words develop in language. No other milestones missing. We figured the classic "boys often talk later". He was a happy healthy responsive toddler. Ran and climbed. Played with toys. Had physical imitation of things like sweeping, brushing teeth and talking on the phone.

18 month check up: We noticed still not saying more than a few words, neither Mommy nor Daddy. He had hit all other developmental milestones. We saw no behavior issues or had any other concerns. He seemed to have some receptive language for typical daily stuff. We decided to wait until two year check up with our pediatrician.

HINDSIGHT: We probably could have tested around 18 months, but I'm not sure we would have had a firm diagnosis. Most of what would establish his autism diagnosis would not emerge until around 2 years of age. Of note some telling signs now were that he had an abnormal crawl: scooting on his butt rather than crawling on all fours, also he did not point to objects or people. I think, not pointing is a big early tip of possible autism.

2 years: Still not talking. Receptive seemed low to us compared with other toddlers. He could be a little "spacey" sometimes. No other big symptoms to us, but we wanted to start the evaluation process. We sent our info into the local regional center and in parallel started with the "health care" route. We got a hearing check and blood tests. After those were ok, we had an independent SLP evaluation who did no other assessment than speech and language delay and recommended speech therapy.

2 years & 2 months: We had our assessment by the regional center (California system). An intake specialist and SLP did the assessment.

Aside: I believe these two individuals to be evil incarnate. I wonder how they sleep at night. I have no doubt that they have a super secret instruction to withhold a diagnosis of autism at all costs. I have spoken with many others who have had the exact experience. I suppose someday, someone or some lawyer will have the energy for the big class action. I did not and probably still do not. I am by nature not a litigious person so for me to express the hope that eventually this particular regional center will be exposed is a big deal.

The intake assessment itself was fairly thorough for an hour and a half. They concluded that our son had a speech delay. We asked point blank it they thought he was autistic and they both replied, "No, he did seem autistic at all" They each professed how many many autistic children they had seen and how “they didn’t see autism in him”. They recommended speech therapy. Which in turn became the center funding one hour of speech therapy a week.

HINDSIGHT: In reviewing their intake report itself, it reads like the DSM IV criteria for autism. He was hand leading. He did not point. He had little expressive or receptive language. He had no non-verbal communication. He had lack of eye contact. We reported tip toe walking. He had staring spells (they even observed one) where he was unresponsive for almost a minute. He had a fascination with parts of objects. These people are not that incompetent. They were intentionally withholding the diagnosis in order withhold services. But at the time, you hear "your child is not autistic" and you breathe a sigh of relief. Great, just speech delay. Let's go get that speech therapy.

So at 2 years 4 months: He began speech therapy. His staring spells were increasing. He was beginning to do some hand twisting (an alternate to flapping). On only her second visit, the SLP said to go see someone (neurologist). So we asked his pediatrician to order up an EEG (I was suspecting the staring spells were absence seizures) and refer us to a neurologist (2 mo. waiting list for appt.).

2 years 5 months: had an EEG performed

2 years 6 months: Extensive exam by a pediatric neurologist. Informed us that the EEG was normal. The preliminary diagnosis was autism. He recommended to increase his speech therapy to 2X per week and referred us to the Center for Learning and Achievement (CLA) for a full assessment (3 month wait list). We then contacted our case worker at the regional center and asked for the increased therapy as well as a "new" evaluation. After a month of phone tag and basic bull-crap and stalling, she increased the speech to 2X a week and referred us to the centers Psychologist. We then asked her for another assessment -The Psych informed us that she was not legally bound to perform another assessment and was too busy to do so. She was not inclined to offer additional services and we should copy her on CLA's assessment. I continued over the next few months to hound the regional center and even requested and was assigned to a new case manager; all to no avail. We had even started privately paying an ABA therapist to start work with our son a few hours a week. This was not a highly constructed program at the time, but a small start on discrete trial exercises. Many people at this time would call a lawyer. As I mentioned I'm sort of anti-litigious, and did not have the stomach for it. I would however, not fault any parent for doing so.

2 years 9 months: CLA did a very thorough evaluation and a month later provided an elaborate report on the details of our son's diagnosis of autism and recommendations. I gave up on the regional center and we began to privately pay for a 10 hr/week ABA program. This was managed program through a very good provider. We were now gearing up for his transition to the public school system (this occurs at age 3)

2 years 11 months: school district psychologist and special ed specialist performed a fairly thorough assessment and concurred with the CLA assessment of autism. Our son also in just 2 months showed great progress with the 10hr/wk program (plus the 2 hr/wk of speech). We had our first IEP.

3 years: began autism special day class (mixed model w/ a lot of TEACCH ) and additional educational services (speech and home program)

At 5 years: I like to think of my son as a success story and have started the Autism Blog to share our experience with other families out there. He is still receiving special education services through the public school district. It hasn't been perfect, but we've managed to form a collaborative relationship with his team and our son has made great strides in his development. When I first began searching the web 2 years ago there were limited resources. The few places I did find that shared their experiences and information were so helpful. Visit my links page.

Some lessons learned - my goal of this website is to share:
• If you suspect autism, go get on every waiting list of every assessment center in your area - immediately.
• Get multiple opinions. Trust your instincts.
• Begin therapy as soon as possible. Consider the assessments and what are your child's core deficits and strengths when you examine different therapy modes. My personal opinion is that no one modality trumps all. I feel that most often different therapy types woven into a cohesive program are necessary.
• Do not believe in miracle cures (aka junk science).
• Autism is a neurological condition. Do your research. (I find the MRI studies most fascinating and promising)
• Come to acceptance and realize that treating any serious medical condition is hard work, mentally and physically. You do not get something for nothing.
• Be your child's advocate.