Autism Families And The News


Autistic Meltdown

Meltdown: The aftermath

I’m just going to come right out and say it: I am terrified of my autistic son. He is sixteen years old, stands at about five foot eight and has the strength of three grown men. The slightest sign of frustration in him when I visit and I want to get as far away from him as possible.

Show me any news story about a parent who has injured their autistic child and I’ll show you a family who has broken down through beurocratical neglect. Show me an autistic person with bruises and I’ll bet you any money that the parent or other adult responsible was trying to protect themselves, the autistic individual and those around them from harm.

As a care assistant I was given training in manual handling, but even then I would cause accidental injury to my son when trying to avoid his harming anybody with his violent meltdowns. What chance did I ever stand of not accidentally harming him when he can buck me off him, break my nose and kick me in the neck or face at the drop of a hat? You have to act quickly, and a few minor injuries are far better than other possible outcomes. I would rather that my son had bruises from being gripped by the arm than have him put himself or somebody else in hospital.

When I see news stories concerning autism families that have been driven to breaking point I do not judge; I wonder where the help for them was, why there was no professional or organised respite to step in and give them a break. I am not talking about the abuse that the young boy on the school bus suffered – that was evil in its purest form – I am talking about the autistic individual who doesn’t know how much hurt they’re causing with their actions. I’m talking about the mother who cries herself to sleep at night, knowing that she’s going to wake up the following day and fear – even hate – her child all over again. I have been there; I have felt that fear and loathing towards my son and I have felt the subsequent guilt for daring to feel that way.

But, you know… when you’re balled up in the corner of a room, screaming and sobbing and begging your child to stop kicking, punching and repeatedly pulling your hair… it’s easy to feel that way. It isn’t actually your child that you hate, but the autism that causes that child to become so frustrated that they resort to anger and violence.

Sensory Overload

Sensory Overload

It doesn’t help when you, yourself, are autistic. You are completely unable to control your own fear and subsequent reactions. Sensory overload robs you of all reason.

When my son was born I had no idea that I, too, am an autistic individual. I certainly didn’t know that I had epilepsy, or that either of these things ran in my family. Perhaps it really does take one autist to recognise another, because from the moment R was handed to me… I knew. I wasn’t exactly sure what it was that I knew, just that something wasn’t “right”. He was different somehow.

Why, you might ask, am I writing this? I am mostly writing this because I need people to understand that families who do not receive help and support with an autistic individual as profound as my son face a hard road. They should not be judged for whatever happens when they reach breaking point – the government and social services ought to be doing more to protect these families and to prevent the unthinkable from happening. I am certainly not condoning infanticide or murder in this instance, but I have become so frightened in the past that I can understand why some people have killed their child – either accidentally in self-defence or deliberately because they are not of sound mind, are desperate and don’t really know what they’re doing any more.

Where is the help for these families? Why do these horrific incidents happen when the right measures could be implemented to avoid that level of anger, fear and desperation?

I am also writing this because I discovered, yesterday, that my son has been expelled from his college. The two staff members he injured are too frightened to work with him again and it is felt that he is too much of a danger to staff and students. His foster family are at their wits’ end and none of us know what will happen now. It isn’t even R’s fault – he becomes frustrated, can’t convey his issues because he is almost non-verbal and he doesn’t have the first idea of his strength.

Please, when you see a harrassed, frightened-looking individual and a child attacking them, remember that there is a darker side to autism. When you see a parent behaving in a way that you find unacceptable, bear in mind that they might well be taking measures to limit the damage caused by an autistic meltdown.

Please.

About Missus Tribble

Media volunteer for Epilepsy Action (UK) and advocate for both epilepsy and autism awareness. Seamstress, cross-stitcher, sci-fi lover, ukulele player and Chelmsford's own Pickling Pagan who wants to inherit a TARDIS when she grows up. In the process of writing an as yet unnamed book, with anecdotes and information about being epileptic and autistic - and seeing the funny side! Also an entertainment journalist for What Culture, where I write about Doctor Who.
This entry was posted in About The Carer, Abusive Behaviour, Autism, Autism Awareness, Autistic Behaviours, Autistic Meltdown, Autistic Temperament, Fear, Neurological, Self Defence, Sensory Overload, The Dark Side Of Autism. Bookmark the permalink.

17 Responses to Autism Families And The News

  1. Deb says:

    Thankyou for writing about the more difficult aspects of autism. I do wonder where the help is too. I remember going to a NAS meeting and lots of people asking for help on how to physically handle their loved ones when they became aggressive/violent but the NAS rep said that they didn’t provide training on this for parents. Why? Carers get it so why not parents and families? It was clear from he meeting that there was a real need but instead parents had to put up with a generalised talk about meltdowns. But its one thing dealing with a five year old having a meltdown; another thing entirely when they’re bigger and stronger than you as I know with my son. Anyway I’m sorry that you’re having such a difficult time with your son; I’m not sure I have anything helpful to suggest except for CAMHS, Mencap or the challenging behaviour foundation – could these organisations help you at all?

    • My son is fostered because I’m epileptic and he’s been able to throw me around like a rag doll since he was three years old – I needed for him to be in a far more stable environment.

      I used to be a member of NAS myself – and they are rubbish. Unlike Epilepsy Action they don’t seem to care about their members at all.

      I’m sure that R’s foster family will recieve all the help that his social worker can dredge up, but once he’s 18 in 2014 funding will be withdrawn and I don’t know what will happen after that :(

  2. *sends love*

    Normally, I’d share this link with my sister, because of my niece E being autistic – and also non-verbal. But I’m not going to do so this time because I don’t know how she’d react to it.

    I’m so sorry for you to read that R’s situation has turned out like this.

    • That’s fine; if E isn’t violent then your sister doesn’t need to read this and start to worry! I have been told that R is one of the most violent autistic individuals that many people have encountered, but I know that there are others like him and I felt the need to highlight that the families and/or carers of these frustrated but wonderful individuals need all the support they can get. Instead they get brushed under the beurocratical carpet until somebody does something desperate or awful through not being able to cope any more :(

      • E does a good line in pinching. She used to bite a lot as well but that’s lessened over the last few years. She’s currently in a specialist school 2 days a week and 3 days in a mainstream primary, but in January that’ll change to 3 days at the specialist school, and then in September she’ll be going there full time. She’s improving all the time as a result of the school, which is a good thing. I guess I’ll see an improvement when I get to go home in January.

        I can understand from being with E just how difficult it can be to communicate with someone who is non-verbal and while she’s small, it’s easier to cope with her – but as she grows it’s going to get more and more difficult. When they visited me, I was able to piggyback her round Whitby because every man had taken his dog into town and E is petrified of dogs. But in another 4 or 5 years she’ll be too big for me to be able to do that.

  3. littlesundog says:

    Gemma, you always do a great job informing us on all aspects of autism… difficult as some subjects might be. To be honest, how can any of us judge ANY life situation when we have no idea what a person is dealing with or emotionally feeling at the time? We can never say how something should be handled… we have never walked in that person’s shoes nor lived their life, having any understanding of their feelings. As always, you help us to understand the nuts and bolts of autism.

  4. renxkyoko says:

    I’ve seen an autistic child in action, but I was a child myself and didn’t understand what was going on with my cousin who used to be such a normal, lively boy. By the way, he wasn’t born autistic,.Something triggered him when he was 9 or 10 years old.

    • The autism is usually always there, but suddenly it’s as if the development process either stops or begins to regress. I’ve definitely heard of such cases as your cousin’s though, where something appears to trigger autism in a seemingly “NT” child. The spectrum is still very much a mystery though, so nobody knows why this happens.

  5. That must be very hard, to say the least. It was difficult enough coping with Mr F at times, who isn’t autistic but was very challenging when younger and could be physically ‘almost’ threatening – not quite. I really feel for you. I certainly wouldn’t judge. Captain Savage’s kids are both autistic and one of them bites when thwarted – it’s very hard to cope with, as well as the lack of obvious affection, I think. But I can’t speak for him. You must be so worried about his future. What can I say – my heart goes out to you.

  6. As a brand new intern for a neurofeedback foundation, I am with a team have tasked with doing serious scientific research on the link between autism and leaded gasoline. I will let you know what our research uncovers, if anything. There are some promising signs that we might be on a the right track though. Keep on going.

    • Hmm… as someone who is not only autistic but has an autistic son, I’d have to say that it can’t be linked to anything. It just… is, if you see what I mean. My sister is autistic, my niece has “outgrown” her autism (girls often do – I’m an exception to the rule), my nephew is autistic and my great-nephew has recently begun to display alarming signs. The neuropsychologist who diagnosed R was fascinated to have discovered a family who proved his thoughts on the possibility of autism being genetic.

  7. I’m sorry about things that are happening with R. Fingers crossed.

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