Tuesday, 8 December 2009

The Stress of Autism

Its Official...being the parent of a child with autism is stressful. Researchers at The University of Washington have confirmed what all parents of autistic children know: it ain't easy. They struggled to explain why parents of autistic children have higher rates of stress than parents of other disabled children including those with other developmental disorders. So why might this be?

Well, since I'm going through an especially tough time at the moment with autism, I feel now is a good time to offer up my thoughts. Being a tough old boot, who hates moaning, I find it hard to admit how hard I find it. On the other hand, I'm also known for being pretty direct, so let's tell it like it is, without the sugar coating: IT'S HARD.

There, said it now!




So why is this? Why is it so hard to parent an autistic child?

Well, let me give you a glimpse into the last few days with my daughter. I came down on Sunday morning to find the living room showered in a confetti of cornflakes. Lyla was tossing them into the air, crunching them into the carpet and crawling round on hands and knees gobbling up the crushed remnants. She'd also disposed of all the milk and juice in the house down the sink (because she likes watching it pour away). So, I couldn't even have a coffee before i contemplated the devastation! Then she'd hidden a load of frozen peas under the sofa, which had started to turn. She'd then tried to climb the xmas tree, strangle herself with a curtain cord and scaled the outside of the stairs. Later she refused to put on her seatbelt in the car, screamed at full pelt for the entire journey, yanking my hair so hard that my head jerked backwards and I nearly crashed. I put her outside the car to calm down (with other kids in the car, parked in the middle of the road, hazards on). She lay on the pavement in the pouring rain screaming and kicking, nearly belting a couple of passers-by. Then, there were the usual tantrums and hitting, screaming when things weren't exactly as she wants them and the sometimes impossible task of trying to explain to her why she may need to wait for something she wants.

This is by no means a bad day, this is fairly typical. I usually expect a fair degree of violence and tantrumming. What can grind me down is the relentlessness of it. An autistic child will rarely learn from experience and will usually have the same tantrum about the same thing, day-in, day-out. I cannot see much hope of it getting any better.

Autism isn't curable. Bang your head on the hard wall of scientific fact.

This may never get better.

I will need to live a long time to care for her, she is vulnerable.

I may not live a long time as my health is not good (although I intend to be an awkward sod to the end and prove them all wrong!!).

On a daily level, autism is unpredictable, I can't plan for it: she may kick off today for and hour before school about having to have a pink toothbrush not a red one: tomorrow, it may be because she doesn't like tights.

Autism is an enigma: it is hard to understand, even for those of us who deal with it every day.

This is incredibly isolating. I have wonderful friends with autistic children and we all struggle. But I still have to operate in the real world too, even though our home life often feels like it plays itself out in some crazy parallel-universe.

Because autistic children look normal, their behaviour is often taken to be naughty. I am extremely frequently on the receiving end of filthy stares and rude comments. Luckily, I have developed an skin as thick as a scaly Iguana. But, when I'm having an off day, it can really hurt: I'm not a bad mum, she's not a bad kid, we're struggling, OK. So when my daughter is standing in a supermarket queue hitting me with the basket, swearing at me and shouting that I'm the worst mummy in the world: count your blessings that this isn't your life.

Then there's the sadness that I feel looking at my daughter who is so ethereally-beautiful and knowing how stressful and alien she finds the world.

I haven't touched on the difficulty of getting help. It is almost a full time job to educate yourself in what autism is and how you can help your child. Services are patchy at best and most of the time you get palmed-off onto overstretched charities who try their best but are totally overworked. Then there are the people who see an opportunity in marketing 'cures' to autism. It would take a lifetime to try out every (unproven) treatment on your child. But most of us are desperate enough to give it a try.

Then there's the guilt. Autism is a bottomless pit of need. You could invest your whole life in finding treatments for your child and still this wouldn't be enough. Because, you may never find a cure, you may never be able to help them.

So, a few reasons why being the parent of an autistic child is hard sometimes.

So why don't we hear much more about this from the families of autistic kids? Probably because most parents are so exhausted with their job that there is no time for campaigning. Also, disability is the last socially-permissible bastion of prejudice. It's OK to ridicule disabled people in a way it would never acceptable on the grounds of race or religion. As a society, we are narcissistically-obsessed with our children and when our children don't reflect well on us, there is a heavy price of disapproval to pay.

So, no answers then, just some thoughts.

And if you have a view on this, let me know.....let's get this out there!!!

Rxx


Photograph: Barbara Hepworth 'Madonna & Child'

11 comments:

  1. Well hello there! Yes, explaining why autism is more stressful for a parent than other disabilities is almost impossible.

    Glad to hear you have the hide of an iguana, mine's Rhino hide and I often flourish a plastic horn to ward off those people who are keen to 'put me right.'

    I could write a whole book on the subject of 'the typical day' but I don't think it would make for very exciting reading.

    However, that said, I would beg to differ on one point, namely, it does get better or perhaps 'less intense.' It seems like only a couple of years ago I was still physically carrying both of the boys, one on each hip, but sometime between then and now, this has phased out. Probably just as well really as together they weigh more than me.
    Best wishes

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  2. Great post, I have recently started this journey and every single point you made is resonating strongly with me. The world in general has a lot of adapting to do. Jen

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  3. Thanks for sharing something so impacting and striking (for many reasons). I know it's brave to share, yet I feel it's so important for others to have a chance to understand what it feels like and what it entails. It is certainly not 'un-interesting' reading (although I know these aren't the reasons you do it).

    You are right about being so exhausted. I'm either fighting fatigue, doing things I have to (but don't necessarily want to!) or finding something to take my mind 'off' things.

    You are an amazing, strong and iguana-like woman ;)

    Amelia.x

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  4. A very insightful post (came here via Whitterer On Autism). Like Maddy said, it gets "less intense," but it is a long road. Hang in there!

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  5. Hi All- thanks for your replies- apologies for the long delay in replying- I think I've been suffering from the Stress of Autism!!. It's so good to know Maddy that it does get better, it can seem very relentless sometimes and the future is so uncertain. Thanks so much for mentioning me on your blog :)

    S&Bx

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  6. Hi Jen- thanks for reading and leaving a comment. Sorry to hear you're having a hard time too. Keep in touch- us autism-mums need to stick together!

    S&Bx

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  7. Thanks for your comments Tanya- trying to hang on in there, it's good to hear from mums a bit further along the road :)

    S&Bx

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  8. Glad to have found your blog, and I enjoyed your post quite a bit. I think we all, as parents of kids with autism, can relate to moments like this one. It is miserable sometimes, and it does hurt. We had a humiliating Thursday at therapy where every therapist glared at me while holding my 6 year old down in the hallway to keep him from kicking a hole in their wall or spitting on the other people in the waiting room. It ended with me being bitten too many times to count and scratched bloody.

    All I can say is that it does get better, and even when they regress and it gets worse again, each time I find that the last has made me just a little bit stronger and more able to deal with it.

    And of course it's worth it in the end, even if just for that brief moment of eye contact, or in our case, watching Jaymes open the door and call out to the dog "come in, Midnight." and being so wonderfully amazed by the number of words and the normal tone he used, rather than his usual robotic monotone. Small victories keep us going.

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  9. Oh yes, I can relate completely! It's so hard to cope, especially when they are violent and you have to try to stop them from hurting themselves and others, if we were to do the same to our child as they do to us, we'd be in prison and they'd be in foster care!

    Getting help is so hard, but essential. The earlier we get help, the easier it is to cope. But getting the assessments they need, to pinpoint their sensory difficulties, to understand them, to learn coping strategies, it's a hard mountain to climb and it shouldn't be.

    My daughter went to a specialist assessment unit last year and it became an absolute revelation, she was 11 years old and all the things we had struggled with for those years started to make sense. She was in sensory overload, so she would tantrum. She simply could not understand verbal explanations so talking to her didn't work, only demonstrations and pictorial prompts. But once that overload had begun, we just had to ride it out as calmly as possible. And if that meant me standing in the middle of Tesco while she laid on the floor screaming, then that's what would happen. There was no point in dragging her up or telling her off or trying to reason, because when meltdown grips, then there's no way of getting in there. I simply made sure she was safe, I was safe, and other people just had to make their way around us, and put up with me staring at THEM while they stared at her! They soon remember how rude staring is when I do that! Amazingly, the meltdowns became a lot less intense once I understood this, and she would calm down a lot quicker if I wasn't bombarding her with stuff she didn't understand. And I don't care if it makes me a bad mum, but sometimes only a chocolate bar made it all better again, so she got one! ;-D

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  10. Hi Sweetheart. I was wondering why I'd missed this post as you wrote it in December. I'm assuming Lyla is 7? Believe me, I've been there. The fascination with wanting to know about how things work makes our autistic kids incredibly clever. Their brains are so overloaded with questions that the wiring becomes tangled and everything gets lost in a cloud. And we parents have to suffer with them. But we do also get the rewards when we see progress.

    When Amy was about 3, she used to stand at the top of the stairs and throw glasses to the bottom. We had a runner on the stairs back them and wooden floorboards either side. She was totally fascinated by the smashing glass. We kept the glasses in a high cupboard but she was strong enough and clever enough to move a chair over and stand up on it, able to reach the cupboard. She also used to take her seat belt off, take all her clothes off in the car and sit in the back (I have a Defender 110). That was mild stuff.

    We have a lot to cope with; those who do not come into contact with autism have abolutely no idea what we go through, but we must also point out that our children are wonderful, we love them unconditionally and wouldn't change them for the world. Their behaviour is challenging, granted, but every child has its tantrums and screaming paddies, they all work their parents into a frazzle, some on a daily basis. The only difference is that for us, this will never change.

    CJ xx

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  11. Reading your blog about the stress of raising a child with autism hit home for me today. Many times I am consumed with guilt about not doing enough for my 10 year-old, Spencer. Ironically I could write a book about the time we have spent dragging him to appointments and arguing with our school system. Battles have ben won and gains have been made, but I always feel like I should be doing more. During moments of clarity, however, I say that Spencer saved me from myself. I am amazed at my thick skin. All of us Moms have gained strength and resilience in the face of autism.

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