Break The Autism Taboo
Taboos, of autism and parenting at Ramblings of a Stone Age Queen is one of the best commentaries I have read about the realities of parenting an autistic child who suffers from meltdowns that can result in aggression towards herself and the parent who cares for her. This is not a fluffy opinion piece by a high functioning autism researcher sitting in his lab. This is a concerned parent talking honestly about the harsh realities, the thoughts that spring into her mind in the midst of being attacked by the child she loves. This is the story of mandyque; one parent who has stood up and said "this is happening to me".
I encourage you to visit mandyque's blog Ramblings of a Stone Age Queen where the commentary is posted. If you are a parent of a child with autism leave a message of support. If you feel up to it tell your story. Help mandyque break a taboo that needs to be broken.
Following is the entire comment. I was going to post an excerpt but this is such an honest, courageous and compelling story that I am reprinting it in its entirety. It is a story that should be known:
"I have had a particularly difficult weekend with my autistic daughter, and it occurred to me that there are some things that only other parents of children with autism understand properly. But even then, there are things which are left unsaid, because we are too scared that we will end up facing criticism, or worse, social services involvement. But if we aren't honest about what is going on, we carry on suffering in silence, convinced that we are the worst parents and that we will be hated and reviled if we dared to speak of our deepest fears.
On Saturday night, daughter had a major meltdown. She became so upset and confused that she attacked me, lunging forward and clawing at me, and she spent over and hour screaming blue murder. I have no idea what the neighbours must have thought, she sounded like she was being brutally tortured. The fact is, this hideous scenario occurred because she wouldn't go in the bath, then when I said it was time for bed, she wanted to go in the bath, but it was too late. Perhaps I should have given in and bathed her anyway, but it's all part of her needing to learn flexibility, that she can't always have her way, and besides, I was exhausted already and needed to go to bed myself.
Finally, I was able to get her upstairs, but she lunged for me again, trying to push me out of the way, clawing at my arms and chest and screaming. This is where the shameful part really kicks in. In any other situation, if someone attacked you, the fight or flight reflex kicks in, but of course you can't fight back when your disabled child attacks you, because that is a child protection issue. Nobody considers that it's also a carer protection issue, and no carer wants to admit that they had the urge to fight back. I didn't want to harm her, and I didn't, but the urge was there. The urges included wanting to tear at her hair, putting my hands on her neck, slapping and punching her. In any other situation that would be accepted as a normal reaction, but when it's your child, it's met with shock and concern that you are an abuser. I repeat again that I did not act on these impulses, I did not harm her, but to be put in that situation is an unbearably hard thing for a parent to cope with.
Eventually I managed to get her into the bathroom, where she sat on the toilet, refusing to move for over half an hour, while I got out and waited on the landing. When she is so wound up, she needs a lot of time to calm down, without stimulation and attention, so away from the TV and computer for a start! I sat on the floor, shellshocked and shattered by this latest episode and hoping that she wouldn't come and attack me again. She screamed and screamed for a while until exhaustion made it subside, but she kept winding herself up and having a little scream, which I had to ignore, while making sure that she can't come downstairs again. Finally she calmed down enough to realise that she had to go to bed, and bizarrely, once she had calmed down and come to terms with the situation, she just got up and went, as quick as that. She just stood up and walked into her bedroom, where we had a hug and a goodnight kiss and she went to bed. And that was the end of that, for her at least, the whole situation, over and done with. In the meantime, I'm ready to crack up, I don't know whether to cry or scream, I'm completely dazed by the whole event.
But how do you deal with this sort of situation? I know how to calm her down, I know that putting space between us works, I know that she needs a low stimulation environment and time to process information, but what do you do when your child attacks you? Especially as they get older and stronger, you can't pick a 15 year old up and put them in time out like you can with a tantrumming toddler, you can't lock them in somewhere because that is imprisonment, and you certainly can't hit them back. Manual handling courses are available for teachers and professional carers, but parents are not allowed to do these courses for insurance reasons. There is no protection for the carer at home. Parents of teens and young adults are actually told to call the police, but what is the point of that? Criminalising a disabled young person who isn't being violent because they are bad, but because they are confused and upset? Terrifying them with a visit from a policeman, who we all know is there to catch bad people and stop them doing bad things by putting them in jail? There's little point in calling on help from social services, you end up being made to feel that you are a failure as a parent instead of being supported.
The only people who truly understand are other parents who suffer the same way, but none of us get the help to deal with situations like this. A friend of mine today asked if I had a panic button, similar to the ones that elderly people use to get help, but there is no such support that I know of. What is the answer? I'm damned if I know, but taboos are there to be broken, and if one person can stand up and say 'this is happening to me', maybe others won't feel quite so alone."