Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘DSM-5

The Autism Dream

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Last Day of KindergartenWork.  Work is busy.  Work is…American.  This is the American Dream.  You puts in hard efforts, and you gets big rewards.  We all buy that, right?

I remember when we first got Pudding’s autism diagnosis (actually, Asperger’s diagnosis, but I’ll come to that) how I thought that we could extend the American Dream to apply to this situation.  The Autism Dream.  I was a new immigrant to this unfamiliar land, you’ll forgive me.

If I worked hard enough, if we did enough therapies.  If we tried this therapy, or bought this app.  If we just put in enough efforts, we’d get the rewards we deserved.

And what would those results be?  TIme has changed my answer to that, like it has so many values I took as sacrosanct.  But back then, I hoped for results and improvements, measurable values that we can find in the world of work, but impossible to apply to my daughter.

Still, I had ambition, and I was prepared to graft.

Then yesterday came the results of our reevaluation, which were at once completely expected, and a shock that has left me reeling.  We need to do frequent reevaluations to apply to international schools and set up our therapeutic programs.  That whole free and appropriate education provided by law just doesn’t apply to us overseas.

And so now we find that the Asperger diagnosis, doesn’t apply to Pudding, and should never have been given to her.

“Her language skills did not continue to develop as expected.”

Rather, she meets the criteria for the new DSM-V Autism Spectrum Disorder, with the following additions:

– Language Disorder, Not Otherwise Specified

-Disorder of Written Expression

-Learning Disorder, Not Otherwise Specified

and maintaing her Motor Coordination Disorder and ADHD diagnoses.  Just words in stark black and white.

According to the American Dream, we would work hard and overcome these obstacles, not face more and more challenges as time goes on.  As happens every time I read one of these reports, I’m heartbroken at the difference between the way we view the same child.

Am I not working hard enough to make things better for her?

Hours after reading this report, I placed my girl on the bus for her last day of Kindergarten, and I saw the contrast I needed from the cold and clinical report.  She made an incredible achievement this year.  She has learned to read and write, advocate for herself, make consistent progress, and graduate from kindergarten.

She has gained the affections and support of her peers and teachers.  She has faced the challenge of a new environment, and excelled there.  She has earned her spot in a school, and a place in the community.  She has made me proud every single day.

And that is The Autism Dream for us.  It isn’t that we can work away her challenges, it is that she can grow and develop and match them.  On paper, she doesn’t look good.  In person, she is incredible.

I’d be lying if I said this was easy.  I’m crying as I type.  But I know there isn’t a report that could be written which could ever capture how amazing this child is.  I know, because I’ve written about her for years now, and I’ve barely scratched the surface of everything I could say about her.

The Autism Dream has never been about changing her to fit in, but revealing this world and our societal standards for the imperfections that they are.  She shows me truth, joy, and love.  She shows me what is truly importantl, and I never want to wake up from that dream.

 

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Written by Spectrummy Mummy

May 31, 2013 at 3:50 pm

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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.

The proposed changes to the DSM-V are out and have already some heated debate.  You can go over here to check them out.

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.

Written by Spectrummy Mummy

January 31, 2011 at 7:45 am