We Have a Diagnosis

Hans Asperger interviewing a child in Vienna in the 1940s. He's unavailable for consultation.

We have a diagnosis.  After OT and PT at age 5, vision therapy at age 6,  developmental pediatrics evaluation at 5, formal IQ testing at 6, and six or seven visits to our favorite psychologist, and we have a name.  It’s not colic (hey, that worked for the first few months).  It’s not simply anxiety.  It’s not just hypotonia with sensory integration disorder and convergence disorder.  It’s not oppositional defiant disorder or ADHD.  And it’s not PDD-NOS (pervasive developmental disorder, not otherwise specified), a useless category that says nothing but, “Yup, your kid is quirky but not in a definable way that leads you to any specific interventions.” 

It’s Asperger’s Syndrome, part of the autistic spectrum.  

And I’ve known that for years.  Since our nine months of twice-weekly visits to occupational and physical therapy at age 5, I’ve known there was a piece to the puzzle missing.  The older he became, the more I was certain that AS was the unifying answer, but professionals reassured me that it really didn’t fit.   Okay, but the books on parenting kids with AS helped (a bit), and the parenting books for those with  neurotypical kids didn’t.  And nothing I learned from parenting my first helped with my second. 

I’m not blaming any of the fine professionals we’ve seen over the past four or five years.  My younger is profoundly gifted and highly verbal.  He’s developed a keen if odd sense of humor and can deflect questions he doesn’t understand.  These traits have helped him  for his inability to take the perspective of another or understand the nonverbals (vocal cues, facial expression, body language) that makes up of 90% of  spoken, live communication.  It’s just not working so well anymore.  Folks expect more reciprocity and understanding of subtlety as you get older, and he is just unable to keep up.  He’s exhausted, anxious, and angry. 

I’ve spent nine years as his buffer from and interpreter of the world.  His brother’s been his social lubricant in addition to back-up buffer and interpreter.  We’re exhausted, anxious, and, sometimes, angry.  But at least we can recognize those feelings in each other and offer support and a hug. 

And now we have a diagnosis.  Nothing’s different today.  He’s the same child I’ve parented for nine years.  He’ll require much more of the same approach I’ve given to parenting him, with plenty of interpreting of the world by family and friends for years to come.  So what does it matter?  He’s not in school, so a slew of services to negotiate aren’t forthcoming.  He’s, for now, unaware of his diagnosis, although we’ve had plenty of conversations about his challenges with transitions, jokes, and facial expression challenges.  There’s no definitive treatment to start.  So what does it matter?

It matters.  Now I know why it’s been so difficult to parent him effectively.  Now I know it’s not that I’m a bad mom, a label I’ve given myself two hours into an intractable tantrum, wondering where in the process I went so terribly wrong. I’ve felt I was a “bad mom” during the times I’ve wanted to vanish from a social scene where a meltdown was beginning, feeling the eyes of other parents on me, feeling their disapproval of me and my child.  While my head’s known that label wasn’t true, in the dark moments, that’s where my heart sinks.   With the diagnosis, I can let that concern go.  I didn’t do this to him.

It matters.  Since it’s not my fault, I can’t fix it.  I can support and love him.  I can find assistance teaching him the skills that most of us never give a second thought:  the ability to see through the eyes of another, to feel what they feel, and to read a face and body when words don’t tell the whole story.  But I can’t fix him, and a firm diagnosis is a chilling reminder that no parenting approach will change the biology of his brain. 

Today, and for all days to come, we have a diagnosis.  It’s not a label to stick on him or a box to stick him in, but it’s an acceptance of certain facts of life.  An official diagnosis will open some doors for both of us, take some (self-imposed) guilt off of me, and offer us a frame for the struggles to come.  For that, I’m grateful and hopeful.

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13 thoughts on “We Have a Diagnosis

  1. Hi Sarah,
    I am glad you have this diagnosis because I think as a parent it is of utmost importance to know about one’s child. I totally understand what you mean. I know this is going to add more to your challenge as well your family’s but there is room to learn and grow together with the coming days….My kids do not fall under any of the labels, but have the quirks that just does not fit into normalcy either. I battle with them not knowing if it is growing stuff, or something else altogether….

    And I often wonder if the professionals missed something somewhere…Anyways, wanted to tell you that it is a good thing to know…And yes, they are the same wonderful children no matter what!! It just means that they have a lot more special mom to take care of them in a special way of constant learning:))…

    hugs
    Subadra

  2. Oh Sarah – my heart breaks and sings for you at the same time! I know this can’t/hasn’t been easy, but I am so glad you are finally getting answers and peace of mind. I’d like to say you are so obviously not a bad mom, but I also find myself in that “bad mom” dark hole quite often, so I understand why you might worry. I’m just happy that this diagnosis has helped you to take some of the pressure off yourself. Your boys are both brilliant and so much fun to be around – whenever I teach RE and see one of them in class, I breathe a sigh of relief. And I never say that about teen boys. 🙂

    • Thanks, Cassie, for the kind words. That “bad mom” spot wears on the soul and twists thinking in bad ways. My expectations of myself, my patience especially, are often unrealistically high. I know your road has been full of obstacles, and I admire your perseverance and tenacity in your search for assistance for your children. I’d love to share a cup of coffee and some conversation.

  3. I understand what a relief a diagnosis is. For me, it was sad to have Fiona diagnosed with OCD, and downright scary to here’ psychotic depression’ but at least it gave me a place to go from, tools to use, and as you said, a forgiveness of self. To know that it’s not my fault (well, except genetically) helps a lot.

    How are dad and that household taking it? Healthily and helpfully I hope.

    Hugs!

  4. As others have so eloquently expressed, I’m happy for you that you finally have this explanation. It’s something about us moms…we just tend to immediately feel we did something wrong, always that niggling doubt, always second guessing. I’m happy you feel some release from this. I hope finding out continues to bring you a sense of validation and direction. For what it’s worth, I think you rock! Tight hugs. To all 3 of you.

  5. I was struck by how you mentioned how the diagnosis helped you realize you don’t have to feel guilty. Being diagnosed with Asperger’s myself had the effect of taking a load of guilt off of me as well.

    I had never understood why I struggled so much with things that seemed to come so naturally to others, why I was exhausted by things as simple as fitting a trip to the grocery store into my day when I was living by myself at grad school.

    I thought I must be lazy, I must be self-centered to be too tired out to do things with other people. Learning about Asperger’s helped me realize that maybe it wasn’t my fault. Now I can be more patient with my areas of weakness as I try to work on them.

    I hope that your entire family will have the same release from guilt. It’s not your fault. : )

    • Thanks, Nathan! My son is notibly relieved just since learning of the diagnosis a few days ago (he knew a few days after the formal diagnosis). He’s enjoying learning about AS and delighted that he’s not the only one who doesn’t get the social rules of the world. We have a long road ahead, but at least now we have a bit of a map.

  6. I’ve often wondered about an AS dx for my oldest, but I think, for the moment, that he’s just a emotionally intense gifted kid. Ask me again in a week, though. 😉

  7. Pingback: The Road We’ll Travel « Finding My Ground

  8. I know the feeling that your child doesn’t fit with his peers (and also the feeling of not fitting in with my peer group myself). I’m glad to hear that this diagnosis has given you some relief. I think you put a lot of yourself into being a good mom. I know intentions (and my opinion) don’t count for everything, but I think you’re doing well. Love and support to you my friend.

  9. Dear Sarah, I came across your amazing blog accidentally. I read your response to Hannah Brown’s post about 10 Things To Do After An Autism Diagnosis and was intrigued to look through your blog. Reading your words in this post moved me in such a deep way I felt I had to tell you how much it meant to me to read this.
    My 9 1/2 year old was diagnosed with Asperger’s a couple of months ago, and your thoughts and outlook mirror my own. The road to getting here has been so long and bumpy with so many false starts and dead ends. I cried when we were given the diagnosis, but my tears were tears of relief and happiness. I felt a weight being lifted off my shoulders, the burden of guilt I had been carrying for all these years that I had terribly failed my son as a mother. I felt genuine hope for the first time, not the kind delivered by all those snake oil seller doctors who wouldn’t listen to me. I felt justified that my gut instincts were indeed right on target and I should trust myself. I felt that although we have a long road ahead, finally we have a gps. And most importantly, for me and for my son, I felt that maybe, just maybe I was a good mother after all. Thank you.

    • Your are welcome, Rena. Having the gps along the road is a huge relief. Persistence in looking for answers for a child and following your gut are definite good mother signs, although it can be hard to see that from the inside (reminding myself of that as I type). I’m glad you’re feeling more relaxed, and that by sharing our experience, I could give you some company and comfort.

      Sarah

  10. Wow. I just found your blog this morning, and we have just gotten the same diagnosis for our 12-year-old. We homeschooled in 5th grade, and just started up again in October 2012. Your feelings about your son, his diagnosis, and your own parenting skills mirror my own. So good to know I’m not alone. Thanks. 🙂

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