Screw You, Autism.

One Man Band

Something else has changed.  Again.  Something else has shifted in our lives.  Imperceptible to anyone but us.  How a single word – perhaps a word we were expecting, that we found unsurprising even, can make me crumple to the ground in a heap, I know I should understand as a writer – as someone who attempts to find the power in words – but I don’t.  I am still at the mercy of the people who yield these words, I am still crippled by them.


The words she uttered afterwards like “high-functioning” and “cognitive potential” were cold comfort after that word.  I asked her outright if it was really true, if it was really so.

Off the record, I began And I apologize if this is unprofessional, but I have to know for myself, I have to know the truth – are you labeling him as Autistic because he desperately needs these services or is he actually Autistic?

No, She replied while gesturing towards the seemingly endless numbers and tests results and percentages and age equivalents she had just spent more than an hour going over with us…

He’s actually Autistic.

I felt my eyes well up with tears and my lower lip tremble.  I heard my voice begin to shake while I asked the question, but managed to get through it without letting my emotions pour out onto her vast mahogany desk.  I didn’t dare look over to my left where Scott sat, just out of arms reach.  I knew, from the variety of meetings and diagnoses and news like this before that I could not look over at him.  That if our eyes met and I saw his – red-rimmed and on the verge as well – I would not be able to contain what was building up behind my own.

So I stared forward at the doctor.  I again scanned the words on what were now heavily marked-up pages in front of me, even though I knew these words had already been burned into my memory.

Owen K: Actual Age, 3 years, 9 months.

Age equivalent of 2 years, 10 months.

9th percentile.

Developmental Test, 5th percentile, Range: Low

Expressive Vocabulary Test, Age Equivalent of 2 Years, 6 months.

Adaptive Level (High, Moderately High, Adequate, Moderately Low, Low)

Owen’s Scores: low, low, moderately low

Low, low, moderately low, low

Low, low, low, low

Low, low, low

Overall score: Low.

I felt like I had one of those Magic 8 balls in my hands and it kept coming up as “Outlook Not So Good”.  And somehow, the fact that he remained playing happily behind us while the doctor asked us a series of questions, and made this diagnosis, and discussed the wide gap between where he should be and where he was; well, it broke my heart just a little bit more.

It had only been just over ten months since his last major diagnosis.  Since the last bomb had been dropped.  Since our hearts had been broken.  Since new fights had to be fought, plans rearranged, therapies reevaluated, medical journals poured over in some masochistic late-night exercise…

When can we let our guard down?  When can we be allowed to feel the weight of what is, without also needing to feel the tug, the pull, of what might still be?

This is not his most devastating diagnosis.  It is not similar to the stroke or the brain malformation that deeply frighten us with their rarity and lack of definitive prognosis – and that’s sad, isn’t it?  It says so much about the road our life has taken us on.  And this is scary, and has looming questions of its own, and the unknowable stretching out before it, too.  But we are playing triage now.  Figuring out what to do first, and who to call, and what meetings to set up, and where we go from here…  We are in that mode again.  And I can do that.

Somehow, one day, all of this changed something in me and I became something new.

I went from feeling powerless over our future to feeling powerful within our present.

I can do this.  I know this mode.  I know about calling, and advocating, and fighting, and finessing, and when to ask politely, and when to push harder, and when to feel guilty that you called someone an asshole before hanging up on them (and when they just deserved it), and when to ask for a supervisor, and how to schedule, and just how much I can accomplish while listening to hold music from the insurance company on speaker.

So here are my facts about my son.

Diagnoses: Stroke in utero, Cerebral Palsy, right-sided hemiparesis, missing Arcuate Fasciculi bilaterally, brain malformation, Autistic, fucking adorable.

Weaknesses: Cognitive impairment, cannot climb stairs unattended, poor trunk strength, word retrieval, very poor retention of learned materials, impulse control and self-regulation, chocolate.

Strengths: Unusually high pain tolerance, very strong, loves helping, incredibly hard-working – will go through hours of intense therapy without complaint, affectionate, charming, contagious giggle, can fart on command.


What are the chances that this new diagnosis will slow him down in any way? Low.

What are the chances that you will quit fighting for him to get the services he needs? Low.

What are the chances that this will break you? Your family? Your marriage?  Parker’s childhood? 

Low. Low. Low. Low.

Screw you, Autism.  



  1. Leah says

    Jamie – I know this is a very painful thing to deal with – my oldest son is also diagnosed with autism – and we have been struggling with how to handle this situation for many years (he’s almost 19 yrs now). We live in NJ and found a support group called ASPEN and it’s been very helpful. But most helpful of all I think has been finding friends who are similarly situated and understand what it is like. I can’t say it will get easier because it may or may not. My son has made a lot of improvement – but he is still autistic. We are all trying to do the best we can in this thing called life. We have been in crisis twice where he had severe medication reactions – those were terrible times and I don’t know how we survived. But we did. I really wish I had more encouraging words to share because somehow I know you will manage and do the best that you can, which is all any of us can do, and strive to be happy:)

    • says

      Thank you so much for sharing your story here, leah. It’s true what you say – this thing called life – it truly tests us so often. It sounds like whether YOU believe it or not, you are the one in control here… I wish you and your son the best and hope you’ll keep in touch on here! J.

  2. says

    What a blow on top of everything else. I imagine you had two choices: descend into depression or keep fighting for your child. Obviously you’ve chosen option 2. I love your attitude, and I agree…Screw You Autism!!!

    • says

      It may not be the most graceful of ways to handle things – the literary equivalent of sticking your tongue out at someone – but it works for me (so far)! Thanks for your sweet words, Bethany! J.

      • says

        In the earlier days of my situation, I wish I had had the strength to say Screw You Autism! I guess I did in my own way. You have so many more resources available to you these days & they are growing – you are doing a great job and are a marvelous example to all.

  3. says

    Labels are meaningless. Love matters. No one, no doctor, can be certain about what the future holds. Owen is the same child he was yesterday. And you are the same family. I saw a video this week of a child speaking. That’s what I see.

    • says

      Thank you, Beth. It means so much to me that someone I respect so much – someone whose work I look to as a guide – takes the time to read and respond to mine. You have helped me tremendously before without knowing it, so here is my chance to tell you that these words, this reminder to look at what Owen CAN do, have helped me once again. Thank you, Beth. Truly. J.

  4. says

    Some days are harder than others and when you first get a diagnosis it’s like feeling your way in the dark furious that the electricity is out. You know you’ll rise to what needs to be done. You know it can be no other way and of course you love him just as much if not more. Just remember you’re not Super Woman, you can only do so much, and that that is enough. xo

    • says

      Oh yes, Kal! That may be the absolute best description if what this all feels like. I love those words and hate that feeling equally. Thank you for putting it down here – I will not soon forget it. J.

  5. juliesboyz says

    Keep focusing on the “fucking adorable” and “screw you, Autism!” Really nothing else matters. Like several others have said, he is the same kid he was last week. I always say they could call my child a monkey and it wouldn’t change how I feel about him or treat him.

    • says

      I love that, Julie. Our babies are always going to be our babies. That knowledge can weather most storms, I’ve found. Looking at them as who they are – as living, breathing, chubby hands and soft cheeks and kisses and smiles (and sometimes less heart-warming things, too!) – are the things I see when I look at my boy. Thank you for this reminder, Julie. J.

  6. says

    Yes a big FU to autism. I mean really, why does the floor always quake just as you get your footing. It sometimes is too much to bear. The upside is that unlike a lot of other diagnosis you are getting a support system that is available. And hey bonus, he is only about a year behind developmentally so that is great news too. It means he is growing and developing and freakishly adorable.

    Your son is great. Autism is not. But your son is adorable, loving, yours and awesome.

  7. alison says

    Great post! There is no doubt that this “word” will not set Owen back at all and that you will find the right drs/therapists/strategies to move foward with another diagnosis but, in the end the thing I see is not just the adorable boy Owen is but, the strong resourceful parents that you and Scott are. I no longer believe that everyone gets what they can handle but, you are handling your situation in a way that other parents should aspire to. The ability to keep fighting for what he needs and not letting any labels define Owen is inspiring. Your blog is a good reminder to others that what seems like a “blow” of a diagnosis doesn’t have to hold you or your child back but, instead challenge you to find the next hurdle to jump over and kick down. XOXO

    • says

      Thanks so much, Al. Having friends like you for (holy crap) EIGHTEEN years has buoyed me through even the choppiest of waters. You have had more than your fair share of hell doled out on this front as well, and wish you gave yourself the credit you deserve for all you have done for your boys. We’ve come quite a ways from worrying about what to wear out to the bar from our Freshman days, huh? xoxo, j.

  8. says

    We actually just started our 9 month to 1 year wait to see a development pediatrician so that my son can be screened for autism. We have already decided that that diagnosis would not change him. He will be the same sweet kid even if he is labeled with that diagnosis. From the moment that we found he had epilepsy we decided that epilepsy is just part of our life, not our entire life. It will be the same again.

    Hopefully this will help you guys get the appropriate therapies and you will start seeing great progress.

    • says

      Thank you for sharing your story here, Sandy. I love your “glass half full” perspective and know it will serve your son and your family well… I hope you’ll keep sharing here and keep me updated on your son’s progress! J.

  9. says

    Ugh. This brought me back to the moment my son was diagnosed with autism. For me it was a blow in a different way…I had grown up with a brother who has severe autism, and had always secretly feared one of my children would be, too. My son was only 22 months when he was diagnosed. At the time they called it “moderate.” To be honest, I hated the doctor in that moment, as nice and well-meaning as she was. I hated everyone there. Those first few months were a blur…but I’ll tell you, it does get better. My son is almost six…yes, he gets OT because of fine-motor issues. Yes, he attends a social skills group because of social stuff that doesn’t come easy to him. But he is doing so darned well. My worst fears were not realized. He is what you would call “high functioning,” so if that is what they said in reference to your little guy…I can tell you in our case…there is a lot of hope to be had. There is always hope. Hang in there…if someone had told me that day where my son would be in four years, I wouldn’t have been able to fathom. But here we are. We’ve made it this far…and you will, too.

    • says

      Wow, Deb – what an incredibly powerful story you have. Having fears realized can knock a person down harder than those things you never thought to fear in the first place. Thank you for sharing this here, and for your hopes for Owen. Please keep me posted on your son’s progress – I’m so happy to hear that he has gone on to push past your fears and turn them into triumphs! J.

  10. says

    Here via Love That Max. I want you to know, as an adult autistic, autism may be a part of who your son is but it won’t lessen his strengths. He’s sitll him. Labels can help youf idn the right services, and as he gets older, he will be able to get to know others with the same problems, but each child or adult is still different. I admire your optimism.

  11. says

    I don’t know much about Autism, but I do know about labels. I know that I was born with a laundry list of them. I know that my parents, especially my mom, never let them define me. Medical experts prepared my parents for the worst (brain damage, inability to walk, etc.) but they too said “screw you”. I still have my limitations (and my self-conscious woes are a work in progress) but for the most part we succeeded in kicking ass and I know — I just know — you and Owen will too. You are blessed to have each other. xx

    • says

      Thank you for this, Lara. I felt from your writing that we were kindred spirits somehow, but what you’ve shared here just cements that… Good for you for kicking ass – my hope is always that Owen will follow in the footsteps of amazing people like you… xoxo, J.

      • says

        So the kindred spirit feeling wasn’t just me?

        Believe me, I am not amazing. Somehow, by the grace of God and some highly adept surgeons (and a mother who obsessively questioned and researched each label/diagnosis thrown our way), I turned out okay. And I wasn’t nearly as adorable as Owen. 🙂

  12. Melissa Carmona says

    my son was diagnosed with autism as well. and like you I can’t count the time I’ve cried, felt betrayed, sad, angry, and hopeless. and like you, the fact that its labeled “high functioning” didn’t make me feel any better. I too have had to fight tooth and nail to get him the services he needs. He gets ABA therapy (which has been a God send) Monday-Friday for 2 hours straight. He gets speech and OT 4 times a week (2 times a week in school and 2 times a week out of school). he’s 5 and in kindergarten and the light of my life. there isn’t anything I wouldn’t do for my son. He loves hard, plays harder, and is so compassionate and loves his family fiercely. thank you for sharing your story about your beautiful son! words like yours give moms like me hope and strength 🙂

  13. says

    This is a heart-rending and HOPEFUL story!

    My story isn’t as powerful, but I can certainly relate in so many ways. Mother of 3 children in the autistic spectrum and in that spectrum myself, I understand to a large degree how strong you folks are. It is not an easy row to hoe. My row has never been easy to hoe, either.

    I can certainly tell that you know it’s not going to be a piece of cake, but you also know there will be plenty of victories!Your son and family are so very blessed to have you. Women are incredibly resilient. Our children can be even more so. I know at times when I didn’t think I could take one more minute of life, one or more of my kids would walk up to me, give me a hug and tell me it would be ok. If they knew it would be ok – who was I to give up or give in???

    • says

      Thank you so much for this! The only thing I disagree with, is when you say your story isn’t as powerful – we ALL have powerful stories! It sounds like you’re just not giving yourself the credit you deserve after everything you’ve been through. I couldn’t have been easy to raise three children with ASD, and yet here you are, cheering on other mothers! You are clearly stronger than you know, but your character comes through regardless and is appreciated greatly here… J.

  14. John says

    Great blog! In the past…. when times got tough, hope seemed to be fading, and that feeling of going backwards came creeping…I used to read and tell myself – “Welcome To Holland!” This will be my new battle cry – SCREW YOU AUTISM!

  15. says

    Jamie, you are my hero. With these words, you have given so many mothers who are reading this strength they didn’t know was in them. I am so in awe of your attitude. You have my respect.

  16. Anna says

    I’d rather be autistic than not because it made me a better person. I feel that I’m more intelligent, creative, and moral with it than without. Sure, there are times when I am frustrated with myself, as any other person had been, but I’m content with being autistic. Don’t let the labels and autism haters drag you down. A word doesn’t define who I am and neither do the users. A diagnosis is not who I am, but is an instrumental part of my identity. I have a foothold in life with autism and I’m using it.

  17. says

    (Sorry this comment got a lot longer than I intended). I keep coming back to this post today. It reminds me a lot of where I am on my autism acceptance journey. Almost a year ago I got the you probably have autism talk in a therapy appointment with someone I had met with all of twice so far, which came as a shock, especially since I came in with the understanding from previous counselors that I was socially anxious and had OCD, but would be fine if I could get out of my pattern of complete avoidance. At first I went in search of every reason why this was so wrong and I was so not autistic, but soon the reality set in that I likely was autistic, and I was scared. I may have been a month away from 21 years old and rarely speaking to my psychologist being limited to what I could express through passing on my laptop with painstakingly typed out phrases and by “guess and check” with my counselor trying to guess what I was thinking or feeling as I got frustrated that she wasn’t getting it and then enthusiastically nodding my head when she finally figured out what I was trying to express, and I may have scripted my life when I was alone, and I may have more difficulty with change–even so much as a different color soap next to the sink–but I thought it was all anxiety and would go away soon, and it sounded so much worse labeled as autism. I will never forget what one of my friends told me as she uncovered my fear about the situation. She told me that whether I had this label or not that I was going to be the same person that I was and would continue to be the same person I had always been. I didn’t suddenly become autistic–I may not have known it but I had grown up that way–it wasn’t a new thing, and it wasn’t going to limit me. That seemingly small statement was just one more person telling me it was fine to be a lousy person when she first said it, but now I can look at that and see that she was right. This doesn’t change who I am, and it probably was a helpful discovery. I now know that simply doing anxiety management work is not going to completely resolve my issues, and I may never be completely identical to my peers, but I can slowly learn how to interact with people more appropriately, and I can better understand how to use my senses to calm myself or better yet to prevent myself from becoming overwhelmed to help me fit in better…

    Thank you for a from-the-heart, sensitive post that met me where I am at. 🙂


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