It’s a long story, well, really not that long – it’s only been since April of this year that we were told by a Psychologist that our son (then 2 1/2) was going to be diagnosed with Asperger Syndrome. It still makes me tear up when I type that out. Not because it’s a death sentence – I mean, it’s not like my son has cancer – but because life is already tough enough without having the added difficulties of a neurodevelopment disorder. Like every loving parent, I want to my son to have any and all advantages he could in life, and hearing that he was probably going to have some big hurdles to overcome made my heart sink a little. I went though the range of emotions: disbelief, shock, anger, rationalization, denial, depression & finally acceptance. But … let me begin at the beginning.
I had a pretty normal pregnancy, nothing major to report, (except for gut wrenching nausea & some debilitating migraines for the first 16 weeks!) Toward the end, my blood pressure was elevated & I was eager to meet this little human who had been incubating inside of me for so long. It is safe to say that I was impatient & my doctor agreed that if I went past my due date, he would induce based on my high blood pressure. So that’s what we did. The induction did not work & I was given the choice to go home & then come back to the hospital in 2 days & try it again. I’m a stubborn gal & I looked at my husband and said “I’m not leaving this hospital without a baby.” So the decision was made to have a c-section that evening.
Our Boy was born perfectly healthy, 7lbs / 9 oz & 19.5 inches long. No issues, and we left for home 3 days later. He was a great baby, latched on & was a champ at breast-feeding … until my milk dried up. We sleep-trained him at about 4 months & I taught him to sign when was 6 months old. He hit all of his milestones either early or right on time. No issues to report – he developed amazing speech skills, made eye contact, and smiled at us a lot. There were no red flags for the first two years of his life. He did cute and curious things that we didn’t realize may have been indications of Asperger Syndrome. Things like:
- What we called the “stompy dance.” When he began walking, he would just stop and stomp his feet around – it was really so adorable. Now I know that he might have been looking for extra sensory input. (And looking back even further when he was just a baby, he loved that crazy jumperoo thing that hung in the doorway – could jump in that thing for HOURS!)
- He could spend inordinate amounts of time looking at himself in the mirror, (luckily we have mirrored closets, so he could enjoy his reflection for quite a while.)
- He would (and still does) spin around and around. (Again, seeking that sensation of feeling dizzy.)
- Bending over to hang upside down to get that same sensation. (He still does this.)
- Odd repetitive speech patterns: “taka-taka-taka” (Still does this as well.)
- He has always loved to swing … it’s the only thing he wants to do at the park most days.
- Banging or throwing his toys on the floor or the table – which would literally drive me to drink (don’t worry, I waited until 5pm for my glass of wine, but boy oh boy did I need it after hours and hours of hearing toys slam on the floor.) Luckily, we have pretty much eradicated this behavior!
- Flipping over his toy trucks & cars to watch the wheels spin. (He will occasionally still do this.)
- Lining up his toys and making patterns out of them rather than playing with the appropriately. (Still does this, but also plays appropriately with his toys, too & the patterns are intricate and amazing!)
- Spacing out as though he were in a completely other world – as though he didn’t even hear me when I’d be talking to him. (Still does this sometimes.)
- Banging his head against his pillow to help himself relax. (Still does this.)
- Not into arts & crafts, coloring or getting his hands “messy” with glue or food. (He’s a boy – we totally understood that he’d rather zoom cars around the floor than make a handprint turkey.)
- Has difficulty with transitions or change. (The Boy loves his routines!)
- Obsessing about movies, subjects, books for weeks at a time. (He’s gone through all of the Pixar movies & is currently obsessed with The Peanuts.) He knew the entire solar system, the order of the planets & which one was the hottest, coldest, etc., when he was just 2 and 1/2.
None of these things caused my husband or I to be alarmed. We knew he was a very bright and unique child with a thirst for knowledge. All of these things, (with the exception of the throwing & banging of toys,) were cute! The only reason that we ever ventured down the road to getting a label for this behavior was because of preschool.
Preschool. We weren’t even going to consider preschool until he was at least 3 or so. I’m a stay-at-home mom, so there was never any reason to send him to preschool. But I got pregnant right before he turned 2, and figured that it might be a good thing for him to have something of “his own” so that when the baby came, he didn’t feel like he was being replaced … and also because I knew I’d being going to the OB/GYN a lot, so why not have him go to preschool and learn how to socialize with other children while I go to the doctor. Well, I lost the baby, (another story for another day I suppose,) and since we had already paid for the first month, I decided why not just let him go for 3 days a week – it was only 3 hours in the morning – and see if he liked it.
He not only liked it, he loved it! He would tell me all about all of the “friends” in his class on our way home each day. Come to find out, he wasn’t playing with any of them – just observing from afar. His teacher was constantly reporting to me that he was not acting like a “typical” 2-year old … he was hitting & kicking, pushing & spinning. Inattentive, disruptive, and didn’t make eye contact with her or the aide. Except for the eye contact part, everything else sounded like sort of normal 2 year old boy behavior – lots of friends with kids the same age said theirs were behaving similarly. So I disregarded the eye contact stuff because he usually always looked at me, my husband, my mother & other close family and friends. I considered pulling him out of preschool – maybe it wasn’t the right fit, maybe he was too young – but because he expressed to me how much he enjoyed going, I decided to play it by ear.
Well, after a couple of months of cringing every time I picked him up from school – nervous to hear about his behavior that day, wondering if they all thought I was the worst mother in the world because my son was aggressive – things escalated rapidly. We were called into the Director’s office one morning — The Boy had picked up a play kitchen table & hurled it across the room, narrowly missing a few kids. When the teachers yelled at him to stop, he laughed, picked up some large toy trucks and started throwing those as well. The Director and the Teacher gingerly broached the subject of Autism. They weren’t giving a diagnosis, but they were explaining that they noticed some things that they considered to be red flags, and encouraged us to seek help from Los Angeles County Regional Center. We were told that they were a government agency that would assess The Boy, and provided free help for children on the Autism Spectrum or with other Neurological Disorders & Learning Disabilities.
My husband and I walked to the car, got in and I started to cry. No way was my child autistic! He talked all the time and had excellent speech, above average cognitive reasoning … he was affectionate and outgoing, social and curious. But deep down inside, I knew something was amiss. The little things that I had thought were normal and cute and typical behaviors started to cause me concern. The spinning, the spacing out, the obsessively turning on and off the lights … and over the past couple of months, he had started to hit me and my husband. So, I figured what could it hurt to call Regional Center – it was free, my tax dollars had already paid for the service*. If something was wrong, I wanted to address it right away, and if not, then I wanted to be able to say “see, nothing is wrong with my child!”
I filled out the paperwork, and sent it in the following day. On the form it said it could take up to 45-60 days to process. Of course it would, it’s the government for Pete’s sake! By that time, he’d be on summer break & wouldn’t be in school anymore! In tandem, I called our Pediatrician and scheduled a consult. Our Pediatrician is a really wonderful man, a wise, calm, easy-going, and patient man – quite literally, the best in town. He said that the behavior he was witnessing in the office that day was totally normal for The Boy’s age, but it wouldn’t hurt to go through the rigmarole at LACRC. We all agreed it was too early to put labels on The Boy.
Truth be told, I was not expecting our experience at LACRC to be all that great, mostly because it was a government-run agency. Boy was I wrong. I received a phone call 4 days after filing our paperwork. Our case manager was not just some emotionally detached “government drone.” No, quite the contrary. She was kind, generous, and genuinely concerned. She scheduled assessments without even having us come in for a first meeting with her. “Time is of the essence” she said, “and we need to get you some help quickly.”
Right away, we had a slew of assessments: Developmental, Speech, Occupational Therapy & Psychological Evaluation … Speech was not an issue for The Boy, but it was a requirement for LACRC. As expected, he scored off the charts for speech – way above his age, but the therapist noted trouble with transitions, the banging of toys, and lack of eye contact with her. Developmental assessment, he tested at or below his age, except for speech. Occupational Therapy was interesting … he was exhibited some sensory processing and response dysfunctions. And the word that kept coming up at every assessment from each evaluator was “perplexing.” The Boy was “a perplexing case.” They all explained that he didn’t fit into any “mold.”
When it came time for us to meet with the Child Psychologist, I had no clue what to expect or what was going to happen. In hindsight, I really should have had my husband and / or my mother accompany us. My husband was very busy at work, and although my mom offered to come with us, I told her it wasn’t going to be a big deal. Well, I was wrong.
The Psychologist tested The Boy while I filled out paperwork. We were there for almost three hours. I was impressed with how well The Boy handled everything, especially because the assessment spilled over into his lunchtime & nap-time – a definite disruption to his routine. She interviewed me while he played. We discussed family history … no, nothing on my side, but on my husband’s side, he has a (now 20 year old) nephew who has Asperger Syndrome. And, I confided to her that I’ve always suspected that my husband is a little bit of an “Aspie” himself. (The Husband loves his rituals and routines. He is the smartest man I know, with the driest wit, and we always joke that I’m the “social bridge” in the relationship, meaning that he’d never see his friends if it weren’t for me arranging get-togethers.)
The Psychologist continued to do her work, talking more with me, observing The Boy. “Well, he has made eye contact with me, and he doesn’t meet the criteria for classic autism, especially based on his speech and cognitive reasoning, so, what we’re looking at is Asperger Syndrome. That’s the diagnosis.” I didn’t react in any sort of emotional way, because like I said, there is a family history & truly, it was almost a relief to hear some sort of diagnosis for the behavior My Boy was exhibiting.
I didn’t react until I got into the car and called my husband. No, I take that back, I didn’t even react then. I think I was still in shock. I simply relayed the diagnosis in a very matter-of-fact manner. I could tell The Husband was concerned, and starting to get upset – he came home shortly after we got off the phone. It wasn’t until I got home and was in my own comfortable element … I called my mother, and the tears just came. The one thing she said that stuck with me was, “he’s still the same boy he was yesterday … he’s still the same, wonderful, loving little boy, honey, that has not changed.” So I cried. We cried. And we went through the range of emotions that I listed earlier: disbelief, shock, anger, rationalization, denial, depression & finally acceptance.
After voraciously devouring everything I could find on the internet & in the library, I learned that some of the most amazing people were Aspies, (Carl Sagan, Albert Einstein, Mozart, Orson Wells, to name a few.) And if The Boy did indeed have Asperger Syndrome, it was looking like a very mild case – he is such a social butterfly! I also learned that early intervention is the key to correcting some of the undesirable behaviors. So that’s what we’ve been doing for the past 6 months, (child development specialist, behaviorist, occupational therapy,) and we’re already seeing huge leaps in his progress!
Asperger Syndrome is not a terrible diagnosis … yes, there are challenges, but the rewards vastly outweigh them. Even though My Boy’s mind isn’t “typical” and may not process things / ideas / information in a typical way, I love the way his mind works. I wouldn’t change him even if I could. He’s a beautiful boy with a beautiful mind. And I love being his mother.
*Actually, Regional Center services are no longer free. They now charge each family an annual fee of $200.