I am confused often, and – not only because of my children. My son was diagnosed at 3 years and 3 months with autism. Certainly he had many of the behaviors associated with autism, and after an all day assessment both at home and at the care center, we left Columbia SC that day in June with a new ‘label’ for my son.
I was sort of stunned when we actually got the diagnosis, despite already knowing that he did indeed have many behaviors associated with autism. So why not expect an autism diagnosis then? Just running down the list of indicators, he had check marks for repetitive behaviors, no imaginative play, tics, stimming, significantly limited/delayed speech, tip-toe walking (which interestingly he has only ever done that on that particular day), echolalia, aggression, noise aversion, sensory issues, skin picking, the list went on.
Why did I even entertain the autistic, the bipolar, schizophrenic, ADD, ADHD or any of the other labels he has been given. Mostly it is because for a long time it was the only thing that we could hold onto when faced with his strange and often out of control behaviors. It somehow made it easier to cope knowing that he possibly had a neurological disorder and wasn’t just ‘being difficult’. Oh my goodness how we were thrown through a loop trying to figure it out. He certainly has displayed the traits for all those disorders over the years, and even now he still sort of meets both an ODD and possibly ADD diagnoses.
I was always a little confused by the professionals inability to agree with each other on the diagnoses but mostly as their recommended therapies remained the same, I didn’t delve too deep. Many times though I would sit in a therapist’s office and check boxes, knowing the goal posts always moved, wondering whether to mention a behavior that had fallen away, wondering if it was really necessary to note everything that he had done in the past or just stick with the present. His behavior changed rapidly but for a long time still remained within the parameters of his diagnosis. Even in the past year we met with a pediatric neurologist who diagnosed him with PDD-NOS.
I have slowly become convinced that his behaviors are just manifestations of his limited abilities to cope. The more we work to make him feel safe, secure, wanted, loved and heard, the more he recovers from this ‘autism’ spectrum.
So then the question becomes, did he ever really have autism? If he only had the behavior associated with autism but not autism, then IS it still autism? Can one really grow out of autism? If they do, does that mean they only had a group of autistic behavior or does it mean they really had ‘autism’? I am perplexed by this chicken/egg scenario – do you have autism because you have autistic behavior or do you have the behavior because you have autism, which comes first? Truly I know some kids on the spectrum that never get better, small gains are made but nothing drastic. They certainly don’t grow out of autism, more they grow into it. They adapt, their families adapt, the environment is adapted to make it easier for them. Their parents certainly do everything, often more, that we did, so why has my son shed his diagnosis but not theirs?
Is it truly only the small % who can be genetically identified as autistic who deserve this diagnosis then? Do we need to find some other explanation for the kids who are more like my son. Do doctors need to recognize both the different situations the children are in and the list of traits and behaviors before giving an autism diagnosis?
I guess in the long run we have to wonder why we should label any of these kids. Personally I know for us my son became eligible for services ONLY because of his diagnosis. The behavioral therapy, medicaid, OT, speech etc, have all been integral in helping aid his recovery. Slowly but surely he has steadily improved, to the point where today he has really no autistic behaviors. I am convinced that he needed those therapies though. It has been noted that families of children with autism spend up to an additional $70,000 a year on additional medical services that are not covered under insurance. NY Times blog states this: “… Treatment is extremely expensive. Direct medical and nonmedical costs can add up to as much as $72,000 a year for someone with an extreme case of the disorder, and even $67,000 a year for those on the lower end of the spectrum, according to a study from the Harvard School of Public Health. …”
We are certainly no different. Over the past 7 years we have spent our savings searching for that one clue, that one cure, that one thing that makes the most difference, almost like Ponce de Leon in his search for the fountain of youth! For us, we have been mostly successful. The goal was never intended to ‘fix’ it was only to bring our son to a point where he could feel like he fits, to where he feels comfortable in his own skin, to where he can verbalize and converse with us and his peers, to where he can control his impulses and his emotional state. Our hope was to alleviate his frustration and angst. Again, we were different. Pills were not going to ‘fix’ him, therapies alone were not going to ‘fix’ him, and I use ‘fix’ in its loosest term. He isn’t fixed, he certainly didn’t need fixing, he needed help. He needed help bringing his emotional maturity and his intellectual maturity to a point where the world made more sense, where he wasn’t stuck on hyperfocus or overdrive. A place where his depression, anxiety and stress levels were more manageable for him.
So again it makes me ask, is it truly the group of behaviors that deems you autistic? If you recover do you still have autism? If you no longer meet the behaviors or can beat the behaviors does that mean it was never there in the first place? So many possibilities, so many unanswered questions, so many kids out there needing help, and I am still confused.