Autism by Any Other Name…

Posted by on Mar 12, 2012 | 11 comments

Autism by Any Other Name…

What’s in a label?  I mean, really?  I know the whole “a rose by any other name…” spiel, but I also know that sometimes labels are there for a reason.  Sometimes the label helps you to understand what’s inside the package a little better.

It’s been four and a half years since we first had Jack assessed by Early Intervention in Los Angeles and we took the first steps on this journey of a lifetime together.  It’s been three and a half years since he was formally diagnosed with autism spectrum disorder, autism or ASD for short.

At the time, I had mixed feelings about my child being “labeled”.  I knew that with a formal diagnosis of autism the doors of opportunity would magically open for Jack, and he would be supported both at school and socially, at least through early adulthood.  I also knew that for some people in his life, a label served to “explain” Jack a little bit, and made it easier to understand him.

On the flip side, labeling a child for life can be a harsh thing.  Jack will forever carry a stamp on his forehead, or so I thought at the time, that will cause people to judge my child before he has a chance to show his true self.  This reality shattered me and broke me to my very core.  No parent wants their child to suffer, especially for something he can’t change.

I had no idea how we, he, would reconcile these two very different aspects of the one little word, autism.

What I, we, discovered, is a whole new world just waiting for us with open arms.  People who helped us see the beauty in the chaos, the light in the sometimes profound darkness.  Therapists, teachers, professionals, parent, people who have been walking the same path for a while, and those who have just begun.  People who understood the strangeness that is our reality now, and don’t think it’s actually that strange.  People who cheer things others take for granted.  People who laugh with us at the absurdity of it all.   We found community.

Launching this site definitely helped me.  I started it with the intention of sharing my deliriously funny child with the world, and got so very much more in return.  The inkling of an idea I had in the beginning was reinforced in spades: autism is a gift.  For Jack, for me, for our family.

So, four and a half years on, we are at peace.  Autism is still quite often a daily struggle, but it’s also an integral part of our family.  There are so many experiences and people and perspectives we might never have been exposed to had autism never entered our lives.  I have said it many times before, and I will say it again now: I will go to the ends of the earth to alleviate the things about autism that are painful, hard and stressful for Jack, but I will not wish for him to be “normal”. Jack is the person he is because of autism, and he is beautiful.

A leap into the future.

We are at peace.  Well, we were.  Not now.

We moved to Canada a year and a half ago, and we love it here.  The children are happy, mama and daddy are happy, the family is happy.  It was a good move.

When we got here, Jack was immediately taken in by his new school, and once they assessed his situation, he was given full support.  He transferred to the school near our home this year (he had been on the wait list), and they welcomed him with open arms and a full-time SEA (special education assistant).  He is in the grade one French Immersion program and doing really well.  He’s had no support outside of school, though, because that requires funding from the British Columbia provincial government.  In order to get that, Jack needed to be diagnosed again by a Canadian doctor.  Not a problem, we thought, the only issue is a possible year-long wait list.

We had no idea the wait would be the least of our problems.

The clinic in our area that does the autism assessments contacted us a couple of weeks ago and I began a conversation with a wonderful caseworker.  She requested copies of many of Jack’s reports, IEP’s, etc., so I started scanning and emailing forms.  I think I sent well over a hundred pages out of my four-inch-thick “big book of Jack”, which includes every report, letter, IEP and piece of paper concerning autism that I’ve collected since we started all of this back in August of 2007.

In the interim, I was hearing horror stories from other local parents about how their children had been misdiagnosed with ADHD or not diagnosed at all for years.  Parents who finally, in desperation, paid thousands of dollars out of pocket to hire private clinics to take a closer look at their child and give a more accurate diagnosis.

I was nervous, but held firm to the belief that we’d be fine.  After all, Jack was formally diagnosed by not just one, but two doctors, completely independent of one another.  He has had years of occupational therapy and speech therapy, spent three years in collaborative preschools with special education teachers, had a year of in-home ABA therapy, and has always had a full-time support person in school (Behavioral Interventionist in the US, SEA in Canada).  He has been supported by the Lanterman Regional Center, Working With Autism (for both BI and ABA support), several independent occupational therapy centers, and the Los Angeles United School District (LAUSD). No less than 22 full-time professionals in the last four years have worked with and for Jack.

Every one of these people have and continue to support Jack (including several in Los Angeles, who I consider to be his “team”, and I consult before any big decisions, like putting him into French Immersion).  My husband and I have worked hard.  Jack has, and does work hard.  It’s an ongoing job, and it’s paying off.

Evidently, too well.

The wonderful woman I was in contact with at the clinic here in BC thought of us when a cancellation came up last week, and we scrambled and made the appointment, mere hours after she called.  It was a simple assessment, just another ADOS.  Jack didn’t have school that day due to a teachers’ strike, and he was excited to go play games and work puzzles.  He was engaged.

The doctor’s verdict shouldn’t have shocked me, but it did. She said he “barely met her parameters” for autism, and she was more inclined toward PDD. My heart sank, tears welled in my eyes.

In California, as with many of the United States, PDD does not count as “real” autism.  Close, but no cigar.

All I could think was that all the years of hard work led us to this.  There is no cure for autism, but I guess if you’re close enough to “pass”, you can fall off the spectrum and get shut out of the community.

Both the doctor and caseworker were very quick to assure me that in Canada, PDD and ASD are treated the same.  They both receive the same funding and the same designation from the government. There was still some discussion as to whether they would push for a speech evaluation and more thorough psych exam, but for the moment at least, I was assuaged.

I slept on it for a few days, and became less so.  I realized that I was not, in fact ok with this new diagnosis.  I am very far from ok with it.  My child has autism, not PDD.  I know this.  Everyone who knows Jack knows this.  How can all of the people who have worked so closely with him for so long be wrong? I thought of all the things I didn’t mention in my part of the interview, all the obstacles he’s overcome, all of the “bad” things we’ve dealt with.  I wondered if perhaps I had gotten too cocky and Jack had had too “good” a day.  A perfect storm of neurotypicality, if you will.

After a sleepless night hashing it over in my mind, I sent the caseworker an email asking, politely, that they pursue the additional assessments.  I explained that I understand their position, but in my mind, autism just doesn’t disappear.  I don’t know how much influence I had in the decision, but within a day I got the call that they would, in fact, be going ahead with the evaluations.

I felt some relief, yet a nagging voice in my brain just wouldn’t quit. “I’m not ok,” it said. “I need it to be autism.”

Why?  Why am I so afraid of losing autism?  Why am I afraid of losing what is essentially just a label?  Jack will still be the same person he’s always been, whether his file says “autism” or “PDD” or “purple-winged boogie monster”.  He will still be my hilarious, socially-challenged but eternally endearing, beautiful boy.  Jack will not change without autism.

Or will he? In my mind, he, we, will lose identity.  Community.  Future. When Jack was first diagnosed, I took a deep breath and told myself “here we go, this is his/our life now”.  I never dreamed that would change.  Sure, I expected and hoped for him to adapt and learn and in some ways acclimate, but I never thought for a second the autism would go away.  That just doesn’t happen.

And there it was.  I need autism now.  It’s a part of me. It’s who Jack is, it’s who I am as Jack’s mama, it’s who we are as a family.  Autism joined our family the same day Jack did, and it’ll be with us just as long.

And I suppose if the official diagnosis stands at PDD, not much will change.  Life as we know it will roll on, and Jack will continue to be hilarious and socially-challenged and endearing. And I will stubbornly cling to the name of this website.

In the end, it’s just another stop on our journey together.  Autism really is a trip.

The family that autism built.

*************************************************

**UPDATE**

I had a few more thoughts on this, so make sure you read the follow-up here.

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  • I’ve been on a journey with autism and the label too.  

  • This actually bothers me on so. many. levels. ASD is dx’d young because to fit the criteria you NEED to be young. The ADOS doesn’t account for the amounts of therapy. Or the way an ‘off’ day can be for a kid on the spectrum.

    Jack has autism. Jack will always have autism. And I would insist on further testing. Because whether Canada is going to treat it the same or not…I don’t know. Though I admit in my world? PDD IS AUTISM TOO so it needs to stop being considered something different anyway.

    The label isn’t important but it IS as well.

    Jack is amazing. You are amazing. And whoever did the test? SHOULD want a full eval not just the ADOS. And take into consideration the AMAZING support your kiddo got when he was young. Early intervention WORKS! Hooray! It doesn’t erase autism.

    It’s just like people who have their kids tested later and they are “cured”. No they aren’t. You just found someone to remove the label. The condition is still there. 

    Love you friend.

  • Denee Metzger

    I still can’t get my son officially and formally diagnosed :/
    His ped thinks it’s just ADHD and sensory and obsessive compulsive and ODD and on and on…all the symptoms that fall under the ASD umbrella.Psychs only want to hand me prescriptions for extreme drugs (I have them all written down,but never got them!) the neurologist handed me scripts too….He’s had social workers,been in specialized school programs since 3 yrs old,been to 3 psychs and I just can’t get anyone to give me more than everything BUT ASD.
    I’ve gotten PDD,OCD,bipolar,SID (sensory),ODD,ADHD….I’ve even been told it’s ME.
    The thing that baffles me even more is that there is a FAMiLY HISTORY (his half sister by his bio father) of autism-diagnosed!

    Our country has a long ways to go….but it’s parent’s like us fighting for our childrens future and other families like us that will make the difference 🙂

    •  Denee – I keep hearing stories like yours and it breaks my heart. (((hugs))) You’re right – we have a lot of work to do here, and I’ll keep fighting until every child is properly diagnosed. <3

  • Shirin Sepehrband

    Well first of all, I’m happy to hear that Jack is doing so well… It’s a tribute to all of your hard work and patience Wendy! I know that all of these labels and diagnoses can be confusing and frustrating for you and all parents dealing with children with special needs. In fact, the American Psychological Association continues to change the criteria and labels for developmental disorders every few years with the newly published DSM. Many view PDD as just another umbrella term for Autism. If you think about all of the labels that go along with ASD – “High-Functioning Autism,” “Low-Functioning,” PDD, Aspergers’ – it demonstrates how people want to give a simple label to describe something that encompasses so many complex traits – human traits. I’ve worked with families before whose children “no longer fit the criteria for Autism.” Their reactions have been similar….confused at the loss of a label, thrilled at the progress of their child, scared of what it all means. All it means is that Jack is doing well…he’s making progress in the domains that professionals look at to determine a child’s current level of functioning (cognitive skills, communication skills, social skills, independent living skills and so on). But at the end of the day, Jack is still going to be Jack, and that’s the only label that really matters! I’m glad you’re pushing them to do all of the evaluations…it was premature for the caseworker to give a diagnosis after one observation. Please let me know if you have any other questions Wendy! I know Jack’s not getting any services at home right now so if I can be of any help, please feel free to contact me anytime 🙂

    •  Shirin –
      Thank you – I was hoping you’d chime in here. 🙂  It’s just all so confusing and disheartening, and even with all the hard work there is so much more to do.  The thought of losing everything because he’s “doing well” just scares me so much. 🙁

  • Sandy

    My son has been diagnosed with PDD-NOS. Sometimes I feel oddly guilty that he doesn’t have full autism, as if I don’t get to feel overwhelmed or fearful or advocate for him as much because he only has some autistic traits.
    It sounds like your son has adapted to may things and so those who tested him determined his diagnosed could be ‘updated’. I think the autistic traits remain, the kiddos just learn to blend in to what is expected of them socially, etc.
    You adapted so well to the autism diagnosis. And I do hear your identities are very much interwoven in that description (label has too much charge with it).
    Thank you for sharing; you were very honest and open and I appreciate that and it got me thinking about where I am with our situation. Many good and wonderful days/moments, many frustrating and disheartening moments too – especially the steps forward and back.
    Onward!

    •  Sandy – I really wish we could say Jack was “beyond” autism, but he’s just not, and that’s what frightens me about losing the designation (I just wrote a follow-up post about it, in fact).
      I totally get your guilt about your child – I actually feel the same way about our situation compared to families with low-functioning children. 
      Thank you so much for your insight.

    • Do NOT feel fearful to advocate for your kiddo because they “only” have PDD. As I ranted about previously? PDD IS autism. It’s autism light. It’s often given (in my area) to parents to afraid to hear the real ‘a’ word. It’s also reality. 

      As Wendy said? Higher functioning doesn’t mean your life is simple. Sure you are lucky in a lot of ways that your child doesn’t have x, y, or z. But we could ALL play that ALL! DAY! LONG! And where does that get us? Nowhere. You’re lucky your kid is alive. You’re lucky they’re verbal. You’re lucky they can walk. You’re lucky they look like everyone else. You’re lucky they don’t have a third eye. That doesn’t take away the challenges your kiddo DOES have.

      So you? Kick butt for your kiddo. If there’s one thing I’ve learned in my 4 1/2 years in this autism world? It’s that autism is autism is autism and EVERY kid needs to be advocated for! (Hell kids w/o any dx need to be advocated for too! They are no less entitled to appropriate services than a severe kiddo!)

  • the worstest mommy

    I think the hardest part of losing the label is the possibility of losing the services that got you to the point where people think he no longer has autism because he does so well on these “tests.” Do they stop and consider how much work was put into getting him to this point? That can be very frustrating.

    •  Thank you – that’s exactly what I’m afraid of.  There are supports Jack simply can’t live without, and losing them terrifies me. I wrote a follow-up post about it today, in fact.  Thank you for your insight.

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