Poof!: Losing an Autism Diagnosis

Guest post by Jessica Severson.

When my son was a baby, it was obvious pretty quickly that I didn’t fit in with the other moms. I didn’t want to get together and chat about breastfeeding or potty training. My son was on formula (which always required an explanation) and he was colicky for so long that you couldn’t call it colic anymore. He was a tough baby. He was often upset. Getting ready for naps was hellish. It only made it worse to sit around with other mothers who were so happy with their joyful, calm little ones.

I felt alone for a long time. Then my son was diagnosed with autism and I understood why I’d never fit in with the normal community of parents. We were different. And it wasn’t just in my head, it wasn’t just a difficult adjustment to motherhood.

So I started the search for community again. I found parents of autistic children of all ages. They understood how I felt, they knew all the conflicting emotions, they sat through hours of therapy sessions. I got advice and support and began to feel like maybe I belonged.

Over the course of 2 years my son’s improvement went from inch-by-inch to mile-by-mile. The issues he’d had began to fade: he went from nonverbal to a budding vocabulary, his meltdowns turned into plain-old tantrums, his stimming became normal pretend-play where trains chatted with zebras, his fear of other children subsided in favor of games and playgroups. We saw less frustration and more happiness. He became more easygoing, more outgoing, more enjoyable.

After his diagnosis I didn’t dare to hope for much. I wanted to love my son no matter what, but then all that I’d hoped came true, and so much more.

It should have been the best kind of news. But I couldn’t feel completely happy about it.Now I’m told that in a few years my son will be re-evaluated and his doctor expects that he’ll lose his diagnosis. I will no longer be An Autism Mom or A Special Needs Mom. I will no longer be a member of the community that gave me a home when I needed it most. Maybe it’s already started.

We will still be friends. But my experience, where I lived in the thick of autism for only a couple of years, can never compare with theirs. Their daily challenges, their searches for therapists and schools that care about their children and help them to become a part of the world, it’s no longer something I can empathize with. I am an outsider. Now I’m supposed to make my way among the NT’s (neurotypicals) that we’ve always talked about.

My journey wasn’t for nothing. It may have been short, but I learned lessons most parents never will. I’ve experienced the kind of heartbreak and guilt that most parents never have. I no longer live in a bubble of parental ego-stroking where I get to feel responsible for my child’s accomplishments. I’ve seen just how fundamentally my son achieves things on his own. I’ve learned that developmental milestones have nothing to do with mental or emotional intelligence. I’ve learned to never say, “I don’t know how you do it.” I know the secret: you just do it. You have to. There’s no other option.

Still, I’m not sure where I fit now. I don’t know who my peers are. I don’t know what I have to offer other parents. I used to feel good because I was out there helping people navigate a difficult time. It helped to get emails from parents who’d just received a diagnosis or concerned grandparents who were trying to figure out how they could understand this change in their families. Now, what do I say? How can I tell them to accept the diagnosis when I no longer have to make the same sacrifice? Do I want them to hope for an outcome like ours when I know it’s just not possible for everyone?

And then there’s the issue of how to feel about losing the diagnosis. I’m happy for my son’s progress. But I don’t want him to be ashamed that he was autistic. I don’t want him to feel like he is better than someone with autism. How do I avoid alienating adult autistic advocates who want autism to be something without stigma or shame?

I can’t answer these questions so I’m trying to focus more on my son. What impact will it have on his life to lose his diagnosis? Does he need to know he had it? Will we tell other people? How much is it a part of him and how much of it is separate from him completely? Will he have to worry about a higher risk of autism or other disorders with his own children?

I’m trying to take it a step at a time. I’m trying to find my way through day by day, just like I did when Graham was diagnosed. Maybe I’m ready for the normies. Maybe I’m not. But the thing I know for sure is I have a lot more friends now and a lot more support. Whatever comes, I think we’ll figure it out.

Jessica Severson

Jessica Severson is owner/writer at Don’t Mind the Mess.  Jessica’s bio is interesting enough.  I’ll let her speak for herself.  😉  

 

15 thoughts on “Poof!: Losing an Autism Diagnosis

  1. Alysia

    I am afraid Jill is right.
    I write this as I am on my way to an appointment for my youngest – his first real follow up after his asd dx 18 months ago. Even then he was borderline for the diagnosis as we went back and forth about what criteria he met, and after he has met goal after goal at school and home therapy, I really don’t know what they will say this morning.
    But here is what I do know – you wonder where you fit in and what advice you still have to give? I think you have a ton. You have navigated the system through EI and you know what questions to ask. You have been through the transition to preschool process and know what your rights are. And you are a mom. All of those things make you that “go-to” person that parents look to. And while maybe you are in a different place than them, you still were there. You can give hope, support, and friendship.
    Isn’t that what we all really wanted when we started off on this journey? Someone to listen and nod their heads “yes”?
    Because I think that is huge :) And there is no one better to do it than you.

  2. Miz Kp

    You have a lot to offer through your experience. I also appreciate you saying he is expected to lose his diagnosis as opposed to saying you found a cure. I am glad I met you and hope you do find a place where you feel comfortable. Btw. I agree that you cant get rid of us so easily. I am truly happy for you amd your son. Mau he continue to progress and make you proud .

  3. Kim

    Wow. This could have been me writing this post several years ago. My now 16-year-old son was diagnosed with autism as a toddler. (I happen to be a pediatric OT, and suspected the diagnosis before we actually got it, so I probably had an advantage in acceptance of it.) Now, at 16 and getting his driver’s license next month (gasp!), he can probably best be described as quirky. And HE manages his quirkiness himself (sitting at the end of tables/counters so as to minimize the amount he might be accidentally touched by others, etc.). He has a core group of 7 “quirky” friends that accept and encourage each other. I say all of this to give you a glimpse of what *might* be in your future. As you said, you know this kind of progress isn’t coming to all of our children on the spectrum.

    My experience as a mom of both an autistic child and a NT child is that I have NEVER felt like I fully fit in to any one group of moms. And oh, how I’ve tried. (Military wife/mom groups, PTA, Special Needs, Church, Sports/Team Moms, and most recently, homeschool groups) But I finally realized that most of us moms are only presenting the facebook version of ourselves publicly (the highlight reel), while we all have struggles behind the scenes. Just know that wherever you find yourself, all of us moms are struggling and questioning and posing to some extent. My attitude has changed from “I’m not sure I fit in” to “What can I do to help all moms feel welcome and embraced here?” Isn’t that what we want the world to do for our children? I pray you find your bearings and enjoy the rest of your mom-journey!

  4. Kristin

    Alysia said exactly what I want to, and much better than I could have. You will continue to help other parents find their way because you have so much to offer, and you’ll figure out what it means for G and for your family little by little, just like you have done so far. And we will all help. xo

  5. Gretchen Shea

    I feel like you were taking the words right out of my mouth. My daughter is 3, newly diagnosed, and she is getting a ton of early intervention. I am amazed how many comments from ABA people, doctors, special ed and the like, that are all telling me that she will more than likely lose her diagnosis at some point. Which, I can say already, that I have mixed emotions about it.
    I am thrilled that even in this short time that she is making strides. I too have never fit in with other moms. In fact now that my kid is “not normal” my “NT” moms have all deserted me….they all think “nothing is wrong” with my daughter. However, I am afraid that IF the time comes and she loses her diagnosis that then she will not get the extra help she needs a have a regression of sorts…..I know I am a bit ahead of myself!!!!
    I too might be around for a while. My son is 9 months old and I am starting to see some signs of possible ASD….he definitely has a speech delay or something….anyway….I really wanted to say that your words have helped realize that I am NOT alone no matter what lies ahrad for my children. Thank you for that!

    1. Jessica

      I just went through a freakout about my 12-month-old. From 6 to 9 months NOTHING CHANGED. She was the exact same baby for 3 months straight. She’s still not quite up to speed but things have gotten much better. I’m feeling much more confident about her 12 month pediatrician appointment than I was at her 9 month. I know I’m hypersensitive, I’m trying hard not to be paranoid. :)

  6. Jenny Saul-Avila

    Somehow, I missed this when it was first posted!I guess I also missed that your son was a colicky forever baby – like mine. And the formula battle – even if sometimes unspoken, was felt.

    Much of what you said is pretty much how I feel about what if my son loses his diagnosis. He would still have some Autistic traits, I’m sure – but wouldn’t be really considered Autistic & then what happens? What if he still needs help – how hard will it be to get? And where will be my community? Will I be somehow taken less seriously by Autism & Special Needs parents? And these men & women that I’ve gotten to know, even just a little, through blogs & Facebook have helped me so much & seemed to actually be friends in a way – will I lose these friends? Will any concerns about my son be taken as seriously? Or without a diagnosis, will it fall back into the “all kids do that” thing that always irked me before a diagnosis & shortly thereafter.
    It’s such an odd thing, progress.

  7. Eva

    I am new here…first post…. What a great post,Jessica ! I can certainly relate to so many.
    And Kim-you hit the nail on the head..i still feel that i don`d belong..son with AS and a NT daughter….it has been difficult to connect with fellow moms…my son was just diagnosed @ 6.5…but WE were always different.

    Thank you.

    Eva

  8. Pingback: Preschool and Anxiety | Don't Mind the Mess

  9. Giselle Arvelo

    You are exactly the type of mom I look for, as a mom with a newly diagnosed little girl. Being new to this world, I have only been able to talk with other moms whose kids lost their diagnosis eventually. It gives me incredible hope and the strength to get up everyday and do the best I possibly can for my child.

  10. Jen

    I’m at this point too. Intensive therapies since age 2 but now at age 5 going into mainstream kindergarten and being told they are not seeing enough for an ASD diagnosis I feel a bit lost. I was about to start OT courses but feel conflicted as to where I stand too. I know I can help and continue to help other special needs parents but feel like I have lost a bit of my identity. My 18 yo who is very Aspergers def. is more mild now but still shows many signs so when he leaves the roost and my 5 yo loses his dx I will be a NT mom. I seemed like my identity, the cause I would always fight for. All my walk shirts and magnets and books, what do I do now? I think I hid behind the dx as an excuse or it was just easier to not socialize due to fear of embarrassment or not having anything to talk about other than Autism related issues. Not only do our kids find their identity but we will as well. The new normal.

  11. Danielle

    Hello! My daughter was diagnosed with ASD at 2 1/2 and after just one year of intensive interventions, she lost her diagnosis. She is now 5 and will be starting kindergarten in the fall. She has lost her individualized education plan with the Pre-K early intervention program (part of the public school system) because she tests as neurotypical across the board. However, I have some concerns and am really nervous about kindergarten. I would love to connect with a group of parents who are trying to navigate early elementary school with a child who has lost an ASD diagnosis.

  12. Min

    Hi I’m in the process of getting my 2 1/2 yr diagnosed. Two different specialist already suspect his autistic but need the tests to confirm it. His always been an extremely easy baby I had no clue something would go wrong untill he didn’t meet his milestone with speech, had issues transitioning onto solids and even now still has his milk in a bottle. He has no interest in other kids or anyone els for that matter, has no eye contact and doesn’t immitate/mimic back or have any pretend play. But what’s most painful is his non-verbal. He has never said one word and doesn’t respond to his name, I don’t think he understands anything besides No. My partner left us when he realised the possibility of our son being autistic. I have since lost all contact with family and friends because I don’t feel anyone is supportive or can relate. I don’t know how the future looks for my son, Im so worried my heart breaks when I look at him. I know it must be frustrating for him to be stuck in his own mind unable to communicate and tell me what he wants, the only way he knows to express himself is to cry and roll around and I have to guess what it is that’s making him upset. I hope for his sake that he may also one day loose his autistic diagnosis, I don’t want him to be alone unable to manage living independently after I’m gone. As he has no family besides me, and I have no one but him.

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