Hurry up, he’s three already..!

Normal People Scare Me

Image via Wikipedia

I coloured my world all the shades of guilt during the months after my son’s diagnosis. I used the classics (“did I do something wrong during my pregnancy, did I cause this with vaccines?”) and threw in some extremes too (“it’s my fault he’s alive, so it’s my fault he’s autistic”). But the most enduring guilt I carried for a good year or so, was that I didn’t get it diagnosed soon enough, and wasn’t doing enough since getting the diagnosis. Specifically, I had taken seriously the idea that early intervention was absolutely critical and that if therapies weren’t underway before he was three, then it was already too late.

I knew something was wrong from much earlier than three years old, but I had done some research, narrowed it down to autism, and had read that autism wasn’t typically diagnosed until three years old, and that attempts at doing so earlier could lead to an incorrect (or negative) diagnosis which could be a costly and time-consuming mistake. So I did what I thought was the right thing, and I waited.

Turned out I was wrong. (Hey guess what, the internet is not your best guide to autism..!)

Not only was I wrong about it not being able to be diagnosed until a child was three, turns out that leaving it that late was going to severely hurt his chances of a normal life (apparently). I kept reading about how crucial early intervention was – a message backed up by the therapists we worked with. Made all the worse by how many months it took between diagnosis and the therapists being free to take my son on as a client.

Once the therapies were under way, the message of “do more, do it quicker, hurry it’s really too late already” drove me to push myself to my limits, and then feel all the more guilty for not being able to push myself further. So many times I sought reassurance that it wasn’t too late for him to develop language or a bright future, and each time I just got the same repeated messages “early intervention, earlier the better, long-term prognosis dependent on earliest possible intervention”. Hurry. Hurry. Hurry.

I would be exhausted, in tears, angry, sad, defeated from trying so hard to do so much, and all the time feeling guilty for feeling that way. Each day felt like a ticking time-bomb that I had to utilise as much as possible. Any time I stopped to take a break during the day, I soon forced myself get back into the fray. I’d argue a lot with my husband that we shouldn’t be taking breaks, each hour mattered. It put a rift in our marriage while he tried to stay sane, tried to help me stay sane, and I wouldn’t let us take the breaks we needed so much.

Turns out that early intervention is a nice idea, and can sure be helpful, but it is not the ultimate predictor of future success that I’d been made to believe. It is essential that the parents look after themselves for the health of the marriage, the child, the family as a whole. I had been risking all of that, under the mistaken belief that I’d done everything too late. Driven by guilt to try to catch up on the impossible.

If there’s a moral to the story it is this: It is never too late to improve the life and future of your child. You are very likely to experience guilt for not doing more, and doing it sooner, regardless of how soon you identify autism. Those feelings are perfectly natural. Don’t feel guilty for feeling guilty (yes, that is possible)! Just remind yourself that a vital part of doing the best by your child, is looking after yourself in the process. You soon learn to not let autism rule your child’s life, it’s important to not let autism rule your life as a parent either.

***

An excellent article pointing out that early intervention is not the be-all-end-all: Early Intervention and Autism.

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7 Responses to Hurry up, he’s three already..!

  1. Bevan says:

    Sounds like a lot of unearned guilt to me.

    Why is it thought that leaving the intervention “too late” could potentially harm the child’s development? What mechanism are thought to be at play here?

    • The claim is not that late intervention harms the child, rather that for an intervention to be effective or worthwhile, they should be started before a child is three. The importance of early intervention principally turns on the fact that the brain develops quickly and significantly between zero and three years old. Which is all fine and good, and important. However the developmentally delayed mind does not simply develop at the same rate or in the same way as the “normal” mind, and therapies don’t have to be introduced in those first three years in order to have an extremely positive impact on the life of the affected child.

      And yes, it was a huge pile of guilt I was carrying around for a long time there. I still get the occassional guilty feeling when I try to take breaks from worrying about and working on my son’s autism, but I don’t let it drag me down like it used to.

  2. Clara says:

    *hugs lots and lots, first!*

    I wasn’t diagnosed until I was fourteen. The psychiatrist who diagnosed me said that this was because although I didn’t understand why people did things, I would copy them, and therefore seem fairly neurotypical. My school reports throughout my 7th-11th years said that i was a very quiet student who chose to work on her own and they wished that I would contribute and speak out more.
    I did struggle heavily once I hit high school as I mentioned in another comment, which was what lead to my diagnosis. ❤ But I would agree that it is never too late to start getting help for Autism. I'm 19 now and i'm loving my life, learning about people and their behaviours and speech daily, and seeing the world in my own way. 😀

    • That’s beautiful Clara. And it’s a sign of your intellect when you were young, that you figured out that copying those around you helped you “blend in” in an otherwise confusing world. I’m glad you got your diagnosis, and it helped you to help yourself become the lovely person I consider my friend today.

  3. KDL says:

    I had similar guilt when our daughter was not diagnosed until 4.5 years. It was compounded by frustration that I HAD been seeking advice both from our pediatrician and speech therapists but no one bothered to point us in the right direction until we were literally desperate. In retrospect, the pediatrician is “old school” and isn’t really up on the latest screening procedures, plus was relying on me (a first time mom!) to say more in a more connected way…what?! The speech therapists (via school) are pretty much required NOT to say more than necessary in order to avoid providing more services and/or provoking “sensitive” parents to outrage by the insinuation that there is something “wrong” with their kid. There is something very messed up in our system of finding and serving these children and their families, and I wish I knew how to fix it. Blogs like yours are helping, I hope!

  4. I did that all the time as a kid what your son is doing there on the photo! !!
    I also used to line them up. And so does my son, he is 3 1/2. He only started talking rencently, now he is solving 3x=9 on a white board. When I was young nobody screened for ASD they thought I was just bored to play with those jars all day long…. I still have social and communmicaiton problems, but I have IQ 142 and used to work on WAll street doing really complicated financial math that most people on wall street dont even understand. Its a huge spectrum and everybody is different, but I am grateful to my parents for not interfering and letting me develope at my own pace. What I am trying to say is, sometimes less is more, at least in my opinion. Oh, I have an asperger;s diagnosis. Lots of love

    • Just for the record, that’s not my son in the photo, it’s a generic public access photo of somewhat typical autistic behaviour.

      And thank you for sharing your own and your child’s experiences, I’m always interested in hearing about the lives of those with ASD.

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