Guest post: "Protecting my ASD son from bullying was impossible"

[MumsnetGuestPosts]

One grey, rainy London day my 11-year-old son arrived home from school with his shirt torn and hair matted. There was a sign sticky-taped to his back. It read: "Kick me, I'm a retard."

I ripped it off in fury as a tidal wave of frustration and pity surged through me. "The other kids called me a moron," he whispered, his wide blue eyes filling with tears. "What does that mean? Am I a moron, Mum?"

Trying to protect a child with special needs from being bullied is like trying to stop ice melting in the desert. There were calls to the school, meetings, promises of closer scrutiny in the playground. But basically, when it comes to defeating bullying - particularly when your child is an obvious target - a parent might as well be standing up to Voldemort with a butter knife.
Research by the National Autistic Society reveals that 63% of children and young people with autism report bullying at school – 82% for those with Asperger's syndrome,
compared with an estimated 11% of children in the general population. It also reveals that the problem is largely ignored.

This certainly chimes with my experiences. My son Julius was diagnosed with autism aged three. Autism is chiefly characterised by an inability to communicate effectively, plus chronic anxiety and obsessive behaviour. Not getting a joke, not knowing what to say then saying the wrong thing, being told off but not understanding why, feeling confused, left out, frightened, out of synch, all day, every day - that is the reality of life for someone on the autistic spectrum.

But the condition is also often linked to a very high IQ. My son walked and talked early. In fact, family and friends thought him 'advanced'. So you can imagine my shock when, at about 14 months, Jules just lost his language skills. His brain was like a computer that had crashed.

When the paediatrician made his diagnosis, my first reaction was denial. I bankrupted myself seeing experts – I hate to think how many doctors' children I've now put through university. The next overpowering emotion was guilt. Was it that one glass of wine I drank in the final trimester? Should I have consumed more puréed organic beetroot - or maybe less?

After intense speech therapy, Jules started talking again when he was four. For years, experts had been telling me that he had 'global delay', yet I found him to be bubbling with the most intriguing questions. "If onions make you cry, are there vegetables that make you happy?" "Is a harp just a nude piano?" "What is the speed of dark?" "Is a vacuum cleaner a broom with a stomach?" was a typical daily onslaught.

The doctors with their stethoscopic minds couldn't really diagnose my son. But by the age of five the word 'Asperger's' was being bandied about. "Asperger's is a form of autism, but at the high-functioning end of the spectrum," it was explained to me. "People with Asperger's are often of above-average intelligence. They have fewer problems with speech, but still have difficulties understanding and processing social situations." I burst with optimism: it felt like getting an airline upgrade or a prison reprieve. But my euphoria was short-lived. Every expert agreed on one point: only in a small classroom with specialist teaching, protected from bullying, could Jules ever reach his potential - but getting the necessary help proved a postcode lottery. The waiting lists for special needs schools are so long there are Stone Age families at the front of the queue.

Aged five I had my son statemented, which means that he had a statement of special needs from the education department, promising to "fulfil his educational requirements". I soon learned to decode this spiel too: an educational statement is really just an adroit piece of jargonised sophistry which promises much but delivers little. The system is designed with bureaucratic speed bumps to slow down a parent's progress.

My son was eventually 'mainstreamed' in a local state infants school, with the support of a very kind, although untrained, helper for a few hours a day. It was woefully inadequate. Being told off for laziness or chastised for disruptive behaviour, put on detention for failing to understand homework and constantly belittled by peers, means that for many children with special needs, school becomes little more than a masterclass in low self-esteem. Overworked teachers treated my son as though he were a feral creature recently netted in the Amazon and still adjusting to captivity. And pupils taunted and teased him.

Although by age eight Jules had an encyclopaedic knowledge of tennis, the Beatles, Buddy Holly and Shakespeare, the only subject at which he excelled in school was 'phoning in sick'. Bullying made school unbearable. Most mornings I had to drag him, shrieking and punching, out of his pyjamas and into school. Often, he just wouldn't get out of the car. Would it be excusable to call the fire brigade to cut him out of the vehicle, I wondered, slumped on the curb with my head in my hands, Jules welded to the seat beside me.

"Only fish should be in schools. It's a prison for children. How can you make me sit in that torture chamber all day?" I can remember the mixture of bafflement and betrayal contorting his 10-year-old face into a mask of dismay as he struggled to rationalise our daily battles. The one person he trusted was forcing him into a place where he was ridiculed for being different and beaten up so badly that on one occasion he needed stitches in his head. The incident was brushed under the carpet as "accidental".

How I envied the normal worries of other mothers who fret over sugar content in cereal or how to make broccoli interesting. The parent of a special needs child must be their legal advocate, scientific advisor (challenging doctors and questioning medications), executive officer (making difficult decisions on their behalf) and also, full-time bodyguard.

High school didn't improve things. Jules called his school 'Guantanamo Bay'. But his anxiety was understandable. Venturing out of the house when you have special needs can feel as hazardous as Scott leaving his Arctic base camp. It's no wonder that the hardest thing for parents like me is to stop mollycoddling. All through his teens, I would never let my son leave home without a list of instructions longer than War And Peace and enough supplies in his backpack to set up a comfortable wilderness homestead.

When I read about the horrific fates that have befallen other young men with Asperger's - the tragic death of Steven Simpson, who had his genitals set on fire at his 18th birthday; or the autistic boy known as ZH who, in 2008, was falsely imprisoned and shackled by the police for jumping into a swimming pool fully clothed - my paranoia seems justified. After my son was mugged at knife-point aged 14, I read this comment from a police officer in the paper: "People with special needs are routinely targeted. I'm afraid it's the price of disability."

If this is the price of being born 'differently abled' then the price is way too high. The only way to eradicate bullying is to encourage society to be more accepting. I no longer think of people as 'normal' or 'abnormal' but 'ordinary' and 'extraordinary'.

And I adore my extraordinary son. Despite all the angst and exhaustion, he has brought such joy, humour, wonder, love and compassion into my life. Jules is now 25. With his blessing, I have written a novel called The Boy Who Fell To Earth to help destigmatise autism. The book is about a single mother's rollercoaster ride of raising a child with Asperger's. It's basically The Curious Incident of the Dog in the Night Time - but told from the mother's point of view. While based on my own experiences, the novel is also a tribute to all the plucky, inspirational parents I've met who've shared with me their battles against bureaucracy and bullying.

During Anti-Bullying Week, it's timely to realise that with encouragement, love and support, these unique individuals can fulfil their potential and contribute to society in the most fascinating ways. We now know, with diagnostic hindsight, that Mozart, Einstein, Van Gogh, Warhol, even Jane Austen's Mr. Darcy, were on the autistic spectrum. Jules often tells me that he feels as though he's drowning in his own brain waves. I hope this novel, in its own small way, will act as a literary life raft. And that my son's [[https://www.youtube.com/watch?v=c_25evT6A68
animated story]] will help other bullied children feel strong.

[MooPointCowsOpinion]

Wonderfully written, and I agree with you whole heartedly. I am a teacher and I know there's only so much I can do to protect our more vulnerable children from the bullies. I try really hard. I will still keep trying.

[Alfieisnoisy]

Great post from you Kathy, we have spoken on Facebook about bullying and my son's experience wasn't good in mainstream schooling.thankfully he is now in a special school which focuses on speech, language and communication disorders. I would not wish the experiences he and I went through last yer on my worst enemy.

Your book The Boy Who Fell to Earth was fantastic and I found myself nodding furiously at some of the experiences within....so similar to what I have experienced as a Mum.

You are right, it's a scary world out there.

[ThumbWitchesAbroad]

So sad for your son and all the others who suffer from bullying at the hands of the ignorant. My niece has Asperger's, and although she isn't overtly bullied as such (yet?) she finds it hard to keep friends, and is quite lonely and ostracised by her peers. It's tragic.

I shall buy the book for my sister, but also for myself. Thank you for your post and for writing the book.

[HotterWok]

Great post.

I did post before on bullying:

www.mumsnet.com/Talk/bullying/2448868-Are-we-all-obligated-to-teach-our-children-to-intervene

If you could get a couple of more responsible children to stick up for him, it's most likely that the bullies would back down, they are all looking for soft targets.

[MoriartyIsMyAngel]

I gave up on school eventually. Primary school told me he didn't need to be statemented, they had enough provision for him. He had 33% attendance. Secondary told me that primary absolutely should have supported an application for statementing assessment, but he didn't need it now, they had enough provision for him...

They put him in a tin roofed building at the back of school premises with all the other children who couldn't cope in class - basically, the worst bullies, and the worst victims of bullying! I spent time there with my son (when he refused to be there without me) and once heard staff members laughing 'He runs like a spastic!' about another student - a very intelligent boy who was coping with the serious illnesses of both parents and had only that day brightened up enough to go out and play. I hope he didn't hear them.

I removed DS within months, and home educated him. He blossomed like a flower - astronomy, German, maths. He's now working on a specialized course that I know would not have been an option if he'd stayed at school.

I walk past that secondary school sometimes and see students hanging out of windows, screeching at each other. It reminds me of feeding time at the zoo, no discipline whatsoever. I really feel I might have lost my son if he'd stayed in school, and I also think I possibly saved his life by removing him.

[Bubbletree4]

This is a great post, Kathy.

My current role is chief protector and advocate for my 9yo son. Most children are kind and decent and my son has several friends. This is a huge achievement for him. Unfortunately he is being made utterly miserable by a tiny minority of vicious bullies at school. I would actually go so far as to say that there is nothing "wrong" with my son's brain, although it is a little different and that actually those who really do have something "wrong" with their brains are the bullies. I completely fail to understand what is going on in the head of a person who derives pleasure from the pain of others.

[BeckerLleytonNever]

Great post here. brilliantly written.

My heart bleeds, as my DC has had the EXACT same things happen to her. Shes now 14 and I had to take her out of school, shes now home schooled and does brilliantly. she has 2 good friends in the entire world, and shes quite happy with that, any more people/children around she cant handle.

its disgusting that disability hate crime is on the increase yet nothing, absolutely shit all is done about it.
we live in fear as a result of anti social treatment at the hands of our neighbours/street/so called services.
police couldn't give a shit. nor do social services.

Think of the Fiona Pilkington story. that's us.

Kathy. I shall be buying your book, but all this stuff about disabilities MUST be broadcast louder, front page on newspapers, peak times on tv (although ignorant fuckers wouldn't bother watching, its nothing to do with them, unless they live with it, theyre quite happy to insult and judge but no fucking compassion or willingness to understand).

even the current government doesn't help anyone with any form of disability. they don't care. they don't fucking care.

(you can tell im at the end of my tether, eh?)

Thank you so much for this thread. . for you and your son.

[canadageese]

My son has suffered terrible bullying in mainstream school and at a Pupil Referral Unit. He is quite socially immature, which makes him very vulnerable, and we are also from an ethnic minority, which of course makes him even more of a target.

Children can be quite subtle as well - much of it was not physical bullying and the incidents could be considered as non-intentional until a full picture is built up.

Thankfully we got him out of those awful places, I fought hard to get him a placement in an independent special school where he is thriving, fully funded by our council. He feels more comfortable amongst students like himself, and the high staff ratios mean that any early signs of bullying are nipped in the bud quickly.

Some of the worst schools in our borough for bullying are mainstream secondaries which have excellent academic results and often attract the highly able Aspergers students, but I've met many parents disillusioned by the pastoral care. Their children have more of a normal life than my DS from the outside, and don't have the stigma of being in a special school, but there is a whole other emotional price to pay.

[LyndaNotLinda]

Beautiful, wonderful article Kathy which really resonates.Thank you so much.

My son is already starting to go through this - the low level stuff is starting now (he's 8) and I am waiting for it to really ramp up once he reaches secondary. I will also home ed if I need to but it's absolutely disgraceful that our children are being failed so badly by our education system. 'Every Child Matters', my arse

[Bubbletree4]

PolterGoose, that low level teasing and goading is exactly what happens to my ds. Again, it will cause him reactive aggression and it is my son who is having sessions to counter this. Effectively equipping him to deal with mean kids.

[DeoGratias]

People should also consider small private schools too some of which are very good with children with autism.

[ClashOfUsernames]

Great post. I nodded most of the way through! We too have up on the schooling system for my Ds and now home school him. I feel like I have my child back again!

[stitchglitched]

My son has ASD and I pulled him out of school in February of this year, aged just 6. The total lack of support from the school along with the goading in the playground (which he would be punished for reacting to) was making him so miserable. No way was I going to continue subjecting him to such a damaging environment.

[Bubbletree4]

I am actually going to show my ds some of these posts.

[ToInfinity]

This is terrifying!
My DS is due to start school next year, surely this is not inevitable for him? There must be something I can do to protect him from this?
I loved school, makes me so sad to think that this could be his future.

[bialystockandbloom]

Not getting a joke, not knowing what to say then saying the wrong thing, being told off but not understanding why, feeling confused, left out, frightened, out of synch, all day, every day - that is the reality of life for someone on the autistic spectrum.

So completely true ^ as is all of your post.

I remember seeing you and your son on a programme a while ago btw (sorry can't remember what it was now). He struck me as utterly lovely and charming.

Back to the OP though: what's the solution? (Rhetorical, btw.) My ds (8yo) seems to fall between places - not 'severe' enough for ss (and I think he'd struggle with that), but becoming more of a misfit at mainstream. His inability to navigate mainstream school life, even with support, is starting to manifest in anger against his peers and himself. The low-level, subtle piss-taking, goading and victimisation is definitely emerging. Thankfully his school do seem supportive about it, and aren't brushing me off too much so far, but I have no idea how to prepare for secondary school.

[BananaThePoet]

I find it easy to comment on threads usually but this one is so hard. My son is 25 now and I am exhausted. My son is a bright funny kind good person who seems to be a magnet to cruel, uncaring, nasty people. I homeschooled him when it became obvious he would not survive mainstream education. As a teacher myself it infuriates me beyond incandescense that the main forces for hurt and damage were other teachers who 'led' children into the bullying. It takes no time at all for a teacher to 'signal' to the pupils which child is 'open season' and I'm afraid that is what happens most of the time. The sad fact is that teachers and head teachers set the tone for their school and it is not lack of support that causes problems it is an underlying dislike of certain children that they are unable or unwilling to conceal. Any child who causes difficulty in the classroom especially a child who is capable of spotting spelling mistakes or a math error and who is incapable of knowing not to mention it - is going to have a very hard time. I'd like to say it gets better but now we're struggling with lecturers and 'support staff' who are anything but. Sometimes I just want to stand and scream for hours. Instead I do what I can but it isn't enough. I hate to see my son suffer because people can't/won't take the trouble to do their jobs professionally. He continues despite them but it is all so unnecessary. Why do people delight in hurting others? I'll never understand it.

[Sallyhasleftthebuilding]

DD is a NT child, bright, funny, capable, inteligent, doesnt Stand out physically etc. Yet she was targeted. Months of sleepless nights, tears, school refusal etc, because the teachers have no idea how a bullied child feels, thinks, reacts. There is no record of the bigger picture - HT teacher dinner ladies staff all deal with a different indicident. There is no understanding of how powerless parents feels, that sick feeling as they walk into class eyes streaming,
The exclusuons, snide comments, stuff missing phyical threats - lack of training for children on the outside too weak to stand up for their friends, the lack of trust in adults to help, the fear.
Its not a disabled issue.

[FiveGoMadInDorset]

My daughter is being assessed at the moment for Aspergers, she is 9 and is on her second primary due to bullying. Fortunately the teaching staff at this one unlike the other one are very aware and have been working hard with her to improve her understanding of social situations which she really struggles with. Her class teacher has noticed she is withdrawing from her peers, preferring to sit and work alone, and she has told us once again she is feeling like she did at her old school. Hopefully we will. Up this in the bud but this is a small primary school and I am so worried about how she will cope at secondary. Her anxiety episodes are exhausting and I can only see them getting worse as she gets older.

[Bubbletree4]

PolterGoose, my ds is 9. But he is a good age to read this. Not too young to understand, not too old to get very upset. He takes what I tell or show him as the absolute truth and sometimes it is difficult to explain things so I've used things from this thread.

His school does care for him but the bottom line is that resources are very limited and children who are sneaky can always find ways of doing stuff that can pass under the radar. But I do think my ds can learn to recognise this and critically, he has managed to make a couple of friends.

But I do wish that bullies could be referred for mandatory behavioural therapy or something. Because even if I can dig my ds out of this hole, another child will be pushed straight into it. It won't necessarily be a child with autism but it will be someone.