How Autism Has Changed Me

My turn now. All week I’ve been sharing readers’ responses to the question, ‘How has having a child with autism changed you as a person?’ It was never my intention to share my own thoughts on this, although I touched upon them in the ‘Changes’ post.

But as I read through and shared all the fantastic comments this week, I found myself considering my own question more and more. I also found myself asking, ‘what could I possibly add that hasn’t already been said?’ So many of you nailed what it is to be the parent of a unique and exceptional child with autism, and the effect it has had on you. If you’ve read them I’m sure, like me, you found yourself nodding in recognition. I also found myself greatly admiring the positive outlook and hope that so many people have obviously found.

But there were one or two comments that really stood out for me, and they were not the positive ones. A blogger I admire raised an interesting question about the nature of what had been shared in these comments, asking where were the comments that shared the more difficult, less celebratory impact of autism? This struck a chord with me and made me question how representative a sample of autism parenting those responses were. Where were the parents for whom autism had dealt a devastating blow? Are we to believe that autism has a wholly positive effect, or is something being left unsaid? Is it easier to share the positive effects than the negatives?

Let me make one thing really clear: I believe that having a child with autism makes you a better person. All those contributors were, undoubtedly, right to suggest so. I’ve seen it in the people I meet, the blogs I read and the accounts that have been shared on this site. I do however, think that the more difficult, detrimental effects of autism were less well represented. I understand this- who would want to share such pain? But I do think that, if we are to be honest about autism, then it’s important to share all aspects of the truth.

So here’s my truth: I have experienced some of my lowest ebbs in the last five years. I have experienced despair and I have harboured feelings of anger. I have felt bitterness towards my child and I have resented the life I have with him. I have handled situations in ways I regret and I have, on more than one occasion, been a total knobhead to those around me. I have shown weakness when my family needed strength. I have struggled on some days from the moment my eyes opened until the moment my head hit the pillow. I have grown fearful and anxious about the future and unable to look forward. There have been periods when I felt my heart breaking every single day. I have felt the hopelessness and the guilt of a parent who does not know what they are doing.

At times like this, I have not liked myself very much.

So is this the person I have become? Is this what autism parenting has done to me?

Of course not. Whilst all of the above is true, it is by no means the complete picture. In fact, it’s just a small part of the person I have been. More importantly, these negative feelings and characteristics have become less prominent as time has passed. I think that, increasingly, I share the qualities that have been the subject of most of this week’s posts. Autism has brought me patience, strength, tolerance, focus, determination, gratitude and a whole host of other qualities that modesty prevents me from dwelling on. And of course it has brought the most amazing child into my life. Like all those other contributors, I am a better person and I am lucky.

But people are complicated and emotions are complicated. I still have bad days.

I started writing this blog because I could not find books by people who were struggling with autism. If my blog had a purpose, it was to show that not everyone automatically knows how to cope with or embrace the differences in their child. If I was new to autism and reading these recent posts, I might not recognise some of the experiences described. I might even question how and why I wasn’t in such a positive place. Why wasn’t I a better person?

So this post is for anyone who is at the start of the ride. For those who don’t feel like a better person. I have not forgotten, nor will I ever forget, what it is like. I still struggle with my son’s autism and there are still days when I am most certainly not a better person. But those days are far fewer than they were.

As a teacher, I meet hundreds of parents. Some are brilliant parents and some less so. But I have never met the parent of an autistic child who I did not think was amazing. These parents have been given the gift of brilliance by their children. I am sure you will get there too.

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18 Responses to How Autism Has Changed Me

  1. StephsTwoGirls says:

    Brilliant indeed – your writing always is. Would be the first place I point anyone to who is starting out on this journey. And I think you’re totally right – we get better over time. We learn how to deal with ‘it’ (the autism) and we learn how to cope with emotions being up and down, and we learn that although it’s not possible sometimes to do the things we would have wanted to do if it were not for autism, it’s really not all bad and we can still live.

  2. Thank you for this – you’ve put into words what I find very difficult to express.

  3. greeneyesmom says:

    I so enjoy reading your blog….my children are not autistic, just (adult)people with no excuse….ugh I feel such compassion for you…keep writing.

  4. Having a child with autism has been incredibly hard, terrifying, frustrating, and draining (emotionally, physically, financially). Yet these aspects of parenting a child on the spectrum didn’t change me, though they most certainly, at times, affirmed some of the darker aspects of my nature.

    No, the more profound changes, which were surprising to me, were the positive ones. I knew I could go dark; I didn’t know I could go light, so to speak. Perhaps this is why the submissions sent to you seemed to be mostly positive: going dark is easy so it doesn’t feel like a change. But finding meaning, joy, and even purpose is surprising, and so it feels like change.

    Thank you again for the provocative question, and for including my thoughts.

  5. I guess it is all a process and in the beginning autism really does suck. Of course, it still sucks as our kids gets older, however, life gets easier after coming to terms with it all. Our kids also progress and that also makes life more enjoyable. I realise that I am generalising here and life is not all roses for many families. What I am trying (not terribly well!) to get across is that it is all about the *process*! :)

  6. Rf says:

    Thank you, this is a great blog entry.

  7. What also happens is that you become accustomed to the new life you have, even if it is very different to the one you envisaged. People adapt, and normal life becomes life with autism.

  8. M says:

    I too was struck by an admired bloggers comments on bringing up the negative aspects at times of autism- I felt like it was the elephant in the room that no one wanted to mention and just made me question whether it was ” just our son” who was on the other side of the spectrum.
    I loved ASD’s dads comment- ” I always knew I could go dark “… You’re right, it’s easier to sink then swim I guess.
    Our journey started almost the same time as B’s dad, which brought me to your great blog and has been a weekly re- check of my emotions with regards to our sons autism. It reminds me that we are not the only parents out there who cope and make good their world to get the best out of life. Whilst it is not the life we planned, nonetheless it is the life we have and we are duty bound to ensure we do the very best for our children on the spectrum.
    But it is tough, and reading your blog every week is sometimes painful, as I’m reminded that so many aspects of my sons personality are because of his autism. I then go through a flurry of emotions quite quickly from anger to finally acceptance. And then I go and find my son and kiss and hug him.Alot.
    Sometimes though, I just want to forget. i want to be that mum with a great career, high achieving children whose worries stretched to finding a decent break in half term.

  9. Joe says:

    I have to give you credit for talking about all of our inner feelings as a parent of an autistic child. I love my son unconditionally but I too have been down that road. Countless days of wondering what my life had been if I had a do called normal son. I regret the jealousy of watching dads with their kids my sons age sharing sports and hobbies . We are in a good place now but still have days where I could just break down concerned for his welfare after my wife and I pass it isn’t all positive. I guess we choose how to cope on a daily basis that defines our beliefs. Stay positive but have a support system and allow yourself some clarity time but don’t let it hinder you or your child’s future

  10. I love this poem and for me it says it all. WELCOME TO HOLLAND
    by
    Emily Perl Kingsley.

    c1987 by Emily Perl Kingsley. All rights reserved

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

  11. Donna M says:

    Yes. I still can’t understand what about having an autistic child is meant to be a gift. I just can’t. My son is 8, I love him to death, but I wish he didn’t have autism. I do feel that it has ruined his and our lives. We are making the best of it, but I don’t understand how anyone can say their lives have been “blessed” by it. So that’s another failure on my part to add to all the others, I’m not an evangelical stoic special needs mother to reassure people that it’s ok I have a special needs child because I’ve got some kind of magic ability to derive joy and blessings from it. No. If non autism parents feel like weeping after a tough day/night/month/year with their kids, multiply that by 1000 for me. I’ve not been given any special extra coping armour to enable me to bear this. Apart from his wonderful special needs school there’s been no other extra help above what all parents of ordinary children get. No financial help. No consideration at work. No babysitters or childminders prepared to look after him. Nothing. So for us it’s been hell on earth and we are frequently I despair. Our happiness as a family comes around and outside and despite the autism, not because if it. I’m not allowed to say this to anyone I know. But I’m saying it here.

    • B's Dad says:

      Thank you for sharing this, and please accept my apologies for not replying sooner.I am sorry you don’t feel you can express these feelings to people you know. I think you have a lot in common with my wife. You are not alone. Please feel free to share your thoughts here, or my email is on the blog.

  12. Who am i any more mama says:

    My son is nearly five and after the receiving a diagnosis of communication disorder instead of autism we continue to plod towards a diagnosis with his schools support. He could read at 2 1/2 but could hardly speak until 3 in any understandable way and has bitten, hit, destroyed rooms, and attacked his little brother ( sometimes out of over stimulation) of because he cannot communicate well. He has always pushed away our affection and physical attention ( from the first breast feed he gurned and grunted at me had difficulty latching and fed every hour to two hours for months,I hardly slept for the first six months as he woke so frequently. Nights have been shocking until he turned four with night terrors.he finally toilet trained at 4 1/2 but still wets himself about once daily. I could go on with the daily challenges but would rather say that you are brave to share the pain and misery at times of it all. Myself and husband used to be calm living people towards each other, but our child makes us stressed and we have given up on our own relationship as we aren’t happy being around our son. We have no grandparents alive to help and we just wait in hope of a time when he doesn’t hurt anyone. Wish I could turn back the clock I really do. He deserves his life but knowing what I know I would never have had children as I am not strong enough to be happy living with this child. He makes me want to harm myself. Yet I don’t because he needs me.

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