Funny that I’m following up a post on Thursday on how labels don’t matter with one saying they very much do. I’m allowed to be contrary though, this is my blog, after all.
One of the proposed revisions is to eliminate PDD-NOS and Asperger’s Syndrome as separate diagnoses and put them under the umbrella term of Autistic Disorder. This diagnosis is then sub-divided into 3 levels of severity. I welcome this greatly. I read the Level 1 category, and it is a perfect fit for Pudding, no ambiguity there. Why would there be ambiguity, you may wonder? Because Pudding was diagnosed the same month at two different places on the spectrum, that is why!
When I made the appointment with Dr.P, my husband’s employer helped to secure an urgent meeting with another specialist. We saw her and she briefly observed Pudding and asked us some questions. She felt that Pudding met the criteria for Asperger’s Syndrome, but urged us to go ahead with a multi-disciplinary evaluation with her team. This took place over a month, using many assessments, and eventually she was confirmed with the AS diagnosis, together with mild anxiety.
In the meantime we had the evaluation with Dr.P, who felt that the PDD-NOS diagnosis was the more suitable. That day Pudding was exceptionally non-communicative. We later discovered she was running a fever, which probably explained it. On subsequent visits, she has demonstrated her language capabilities to Dr. P. It really doesn’t matter though, she does have a pragmatic language delay for which she needs speech therapy, her support needs remain the same.
I don’t use the PDD-NOS diagnosis to describe Pudding, because it is too vague and wishy-washy. I’ve met children with PDD-NOS who present just like Pudding, and those who are much more like Kanner‘s definition of classic autism. Most of the time I describe her as having an autism spectrum disorder. I don’t feel that Pudding is significantly different to, or less autistic than a kid with a different diagnosis, but there are differences in the levels of severity and the amount of supports needed. At the age of 2 when she was diagnosed, her language skills were much more in line with her neurotypical peers, at 4 not so much. She may be more Autie than Aspie now. She has an autistic disorder, just like the other kids in her class, but there are levels of severity from non-verbal with injurious behaviours, to much milder social skills problems. These revisions take away the hierarchy of low and high-functioning, confirms that these are all the same disorder, and acknowledges the amounts of support required. As an individual progresses and requires less support, there is potential to move across the levels of severity while still acknowledging that this is the same diagnosis.
The new revisions also includes specific reference to hyper- or hypo-reactivity to sensory input. I’m sure I’m not the only parent who was never asked about their child’s sensory processing abilities until after they’d begun to seek a diagnosis. When Pudding was a toddler she began to spin around and bounce up and down to get the input she needed, but she would say she was dancing. No pediatrician ever asked me if my child liked to spin herself or objects excessively, or stare at lights and fans. I believe that including questions about this during routing well child visits would mean less kids getting missed until later.
I find another useful addition is this:
Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers) [my emphasis]
One of the great misunderstandings about autism is that the individual is unable to form a connection with anybody else. In our family unit, Pudding has very close and appropriate relationships with us all. It is when interacting with unfamiliar or rarely seen people that she struggles. Just because my daughter was hugging me and looking me in the eye when I raised my concerns to the pediatrician, does not mean she is without difficulties with other people. It is nice to see this acknowledged and included in the diagnostic criteria.
My blogger friend Laura at Life in the House that Asperger Built is concerned that some of these proposed changes will make it more difficult for females to be diagnosed, but I don’t agree. I think what we really need is more awareness amongst parents, pediatricians and educators that every individual with autism has a unique presentation, and it is important not to overlook any social communication difficulties or behaviors. The sooner we can get individuals to the right diagnosis, the sooner we can get them the support they need. We need to find our girls before they start “faking normal.”
I don’t think the word “aspie” is going to fall out of usage even though the diagnosis will be phased out. It has entered our lexicon, and many individuals self-identify this way. I’m much more likely to say Pudding is an Aspie rather than Autistic Disorder, level one, but I’m just as okay with “autie” too.
Are the changes perfect? Not by a long shot. But then you can’t possibly do full justice to something as complex as autism, or indeed any of the other psychiatric diagnoses covered in a few pages of the manual. Our knowledge of the human brain is growing all the time, and yet without using a baseline, we might never agree on what symptoms constitute a diagnosis. I know with my own two that children are hard to classify. And yet right now, Cubby doesn’t fit the criteria for DSM-IV or DSM V, Pudding fits both.
Whatever the label we give to people on the autism spectrum at whatever point they come into contact with a diagnostician, let us hope that we see an end to some of the inequity of service provision. Let us hope it makes it easier to get insurance companies to pay for proven therapies. Let us hope that the struggles and successes, the differences of my girl and those like her are acknowledged and supported a little better, rather than being feared or dismissed. We need a change and this is a start.