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Preach & Teach

A voice mail message has come to light where school staff, in Matravers School in Westbury, asked a mother to keep her autistic son at home during an Ofsted inspection. The school suggested that her son took an “authorised” absence.

This happens in schools every day, this isn’t just about Autism, or Downs, or dyslexia, or anything specific – it’s about children being targeted and scarred – not just by children but by members of staff as well. How can we expect an inclusive society, an educated, compassionate world if we preach without teaching?

Another parent, said his 15-year-old son, who has dyslexia, was told by a teacher that his lessons would be swapped during the inspection “because they didn’t want any disruption in classes”.

A couple of months ago a teacher said “I was told to ignore a child’s autism to keep fees coming in”.

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Two severely autistic boys’ parents threatened legal action against a school, claiming they were shut in a room for hours each day. The boys, aged 12 and 14 were pupils at Abbey Hill School in Stoke-on-Trent. They were kept in a cupboard-sized calm room; the room in the picture. The door was not locked, yet it was closed and there was no handle on the inside. We’ve talked about sensory overload or deprivation and there are certain environments that facilitate this and the use of seclusion and ‘calm rooms’ are recognised. They are positive tools to use to assist autistic children, but how does a cupboard with two sleeping bags constitute a calm room? A room with no escape? Or just a room to shove people in when you can’t be bothered to deal with them? Incident reports detail how the boys charged at the door and tried kicking the door handle until it broke. Incident reports about a child trying to get out of a room, which is supposedly designed for their benefit. The log shows him spending the majority of his school day in the room.

A Kansas community is was recently grieving the loss of a 16-year-old autistic boy. Maxwell Webb took his own life. He didn’t leave a note; he was bullied. His father said the mistreatment wasn’t addressed by the school’s administration and was the major factor out of several that led to Maxwell’s death.

An Ohio family says that their 15-year-old boy with learning disabilities was bullied and misled into stripping off and subsequently getting covered in feces and urine. The teen thought he was participating in the ALS Ice Bucket Challenge by his peers.

Listen. Learn. Grow. Accept.

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Christos’ Love

You know how they say children with Autism hate to be touched?
Not true. Some may be overly sensitive to touch, sound, smell. They don’t lack emotion.
Christos hugs, laughs, kisses, cuddles, teases.
Don’t stigmatise the spectrum with stereotyping.

Educate yourselves about Autism.

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The [A] Word: [I]gnorance

Josh, pulled out of Acton swimming baths in London placed face-down by seven officers who restrained him, shackled and handcuffed him.

Andrew Young, killed by Lewis Gill with a single punch in Bournemouth.

Faruk Ali, beaten by two police officers while helping men collect rubbish because he looked suspicious.

Man charged with beating an autistic boy, 16, at a Florida house party.

I can name each and every situation I’ve been in where I could tell that people were afraid of my brother.

Just recently, in August, I took him to our local bakery to get him crisps and iced tea. He got so excited, he stormed in gave me what he wanted and waited for me to get my stuff and pay. He ran up and down, shook his arms, shook his head and made ‘noises’, people stared but we didn’t even notice. Then, as we were waiting in line, I asked him to stand by me and he did; he still shook his head and hands, jumped up and down a bit, gave me hugs and kisses. The cashier then thought she would share that she “..was frightened that he would hurt someone in the shop“. I’m not sure what possessed her to tell me this, maybe she had a death wish; either way it made me want to hit her. Even after all these years, all the insane, unsubstantiated assumptions we’ve heard, my first instinct was to jump over the counter and hurt her; it never goes away. It breaks my heart that people look at him, my gentle, smiling, beautiful brother thinking that he is dangerous. I didn’t respond with “I’m sorry, he’s autistic”, I just explained that he was excited because it was crisps and iced tea day. She went on to speak to him softly and ask him about how his day was, which he completely ignored, but she tried and when we went in there again she remembered his name. It made me think, made me realise that it wasn’t an attack it was a ,misunderstandingautism-children-1-68-001, an ignorant comment made in passing with no harm or insult intended. But when you’ve had people yelling at your brother on the plane to quiet down, throwing him out of supermarkets because he was rearranging chocolates, grabbing children and dragging them away from him, pinching him or touching him just to agitate him and then refuse it and blame it on Autism, when you have teachers threatening to call the police on him – that is your go-to reaction.

When I read stories like the above, I feel the fury of Faruk Ali’s family; I feel the devastation of Andrew’s mother; I feel the paralysing helplessness that Josh’s dad felt; I feel the fear the 16-year old boy felt when he was being dragged across the floor by his hair. I feel it because we have all, at one point or another, been in a situation where our children were victims of ignorant behaviour.

“Control your child”, “What is he doing?”, “Can you stop screaming?”, “Make him stop”, “Is he dangerous?”, “What’s wrong with him?” the list goes on.

Helping with rubbish collection was something he did every Thursday, it was his routine. It probably soothed him in a way, to get rid of rubbish for whatever reason be it cleanliness or to get the off the pavement; it made him happy.  His weekly routine was disrupted by two police officers who decided he seemed suspicious.

Josh, was pinned down, handcuffed and terrified by police in 2008 for “refusing” to leave a swimming pool; he became transfixed with the water, he didn’t want to go. Instead of getting his carers to help the police decided violence was the way to go. Even if he wasn’t on the spectrum, is that the way you want your officers to react to children? His treatment was found inhuman and degrading; “But when they brought him home, he ran upstairs and crouched in a corner, sobbing uncontrollably. He wouldn’t sleep for nights. As a parent, that tears you apart“. It tears me apart, I gasp for air just reading it. It haunts me that this might happen to my brother who loves swimming too, and like a lot of children on the spectrum, he sometimes gets stuck in places, in the movement of the water, the sound of a machine, the feeling of something and has trouble moving on. It gives me nightmares that I might not be there to stand up for him; that even if I am, I probably won’t get to him in time; I probably won’t have the words to explain myself – I’ll just attack.

We are very much aware of the level of fear and ignorance of which the general public is capable of. But we fight so hard, and our kids do too, that when we encounter it, it can turn into a violent defence. Behaving “oddly” or “weirdly” can turn a look into a stare, finger-pointing to an attack and whispering into conspiracy, it can turn a comment into an assault – that’s terrifying for us.

Andrew Young’s mother is someone I thought about for weeks. He had Asperger’s syndrome and was killed by a single punch after pointing out to someone that they shouldn’t cycle on the pavement because it was dangerous. Andrew died because he thought it was important to follow rules; he died because his killer thought he was menacing; he died because we live in a society that encourages violence and ignorance, a society that nurtures subconscious insecurities and a false sense of entitlement and makes our nightmares came true. He was sentenced to 4 1/2 years in prison; message sent?

You think its stating the obvious when we say autistic people behave differently.

We need to say it;

We need to repeat ourselves over and over again because we need it to reach as many people as possible;

We need to make people aware that Autism isn’t a disease;

We need people to learn about it because we don’t have a cure yet;

We need people to understand more about it because you will come across someone on the spectrum sooner or later and it might be our son, our daughter, our brother.

I could keep listing cases. But I think we need to focus on police training, academic training for identifying someone with a disability, or a mental illness; this isn’t a problem just for people with Autism. Authorities need to be sensitive and educated enough to deal with disabled people on a day to day basis. Schools need to educate the society of tomorrow about acceptance; is it that absurd?

Shine light on discrimination against the disabled, institutional racism and the victim-blaming of sexual assaults; not just by police, but by civilians as well. What brighter light to shine than that of education?

We need you.

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Autism Every Day Part 2

Autism Every Day

Following on from that minefield. The mothers speak of how marriage falls apart because of Autism. I think autism makes families stronger. I believe that we are stronger, more in-tune with each other because of autism. If a marriage fails, it’s not because of autism. When you live with it you go through the exact same thing, together. Autism doesn’t cause divorce. Yes, there is pressure, anger, constant fear and you are changed as people for the rest of your lives but blaming autism for your marriage falling apart is like blaming the door when you run into it. The door is there, its constant you just have to work around it, through it. I’m not saying there isn’t a link but to call it a direct cause for divorce is not something I would condone.

Irony: my parents are separated. Not because of my brother, not because of anything to do with my brother. In fact, autism is the only thing they will stand united for, for ever. I admire them for that, because even in their separation they would stand together for him, and there is nothing greater than that.

Up All Night: Says it all. All I can suggest is a schedule, with times and dates. Each hour has the activity they should be doing. Chris loves his programme, it keeps him calm. Every night his programme says he’s going to bed at 9pm, even if he doesn’t sleep until 12pm, he will still go to bed at 9pm. A programme (with pictures if it helps your kid better) will make their lives so much easier. It gives them structure, a routine a place of reference when they get upset. Use hours of the day, or just set it out on a line. Use pictures of activities (as mentioned in previous post) to make a timeline for them of their day. Make sure you point out each activity when its time to do it and take it down when its done. It might be hard at first, but in the long run it will benefit them. Of course, there are times when the programme is the source of the tantrum; if you change something on it, if the time comes and you’re not doing the activity.

Dreams Deferred:

It’s not wrong to admit that it took you a while to let the life you had before go. No, because it was your life and your routine and its gone. We’re quite lucky because Chris started travelling with us at a very young age. So, it became part of his life very early on before he was diagnosed. He loves the process, he loves the plane, the airports. He’s an angel; definitely not always but 2/10 he is an angel – and those two make it all worth it. But that’s not the case with all autistic children. No two children in the spectrum, in the world, are the same. For the siblings I think its different. For me, it made me have dreams, it made me want to go out there and catch my dreams and make them true. It gave my life a purpose so strong, so meaningful. I can sympathise with parents who give up dreams for their children, its not wrong to say it out loud because at the end of the day you made the right choice.

It might be odd, but I don’t worry about him not getting married, or having children. It saddens me that he won’t experience love in that way but I think they experience it in different ways and depth. There are moments when he comes out of his own galaxy and orbit needing your affection and its beautiful. He’s very loving with us – hugs, kisses, cheekiness, sympathy when we’re angry at something, empathy when we cry – he has the ability to share these emotions with us, he just has to choose when. And who’s to say that there won’t be a stunning new treatment in the next decade that will enable us to get closer to them? It doesn’t scare me that he probably won’t have a friend. I know that if he wanted one, he would get himself one. He would want to go play with them – like he does sometimes – he would want to watch movies with them, or engage in their activities – like he does when he wants to. It doesn’t scare me because he’s happy doing solitary things, and he’s happy doing group things – when he wants to. It doesn’t scare me because I can embrace who he is, just the way he is. Just because marriage is considered by society to be a ‘norm’ doesn’t mean everyone should do it in order for their lives to be complete.

Don’t be sad because you, maybe, won’t be able to dance with your kids on their wedding day. Be glad that you can dance with your kids every day.

No Surrender:

Some of the comments read that the video presents autism as something unbearable, as the parents complaining about their lives. If you live with autism and say you’ve never complained – you’re lying. Everyone is allowed to complain. Everyone is allowed to get off that horse, have a little walk around as long as you ALWAYS get back up on that horse. There is no surrender, this is our life. Everything we do is autism, everything we spend, every step we take is autism. It’s not weak to complain, or reminisce or say out loud how hard it is. It’s healing, and it doesn’t make you a bad parent. Further to this, like I’ve said before, no two children on the spectrum are the same, which means that no video, documentary will ever be able to please everyone. They need to take individual cases, they need to tell their stories; just like you need to tell yours. So, share your story and make people aware.

Autism isn’t all stress and sleepless nights. The first time they say a word, the first time they do a small thing they’ve been working on for months, the unexpected affection, the indescribable feeling of passion and power they give our lives are more than enough to keep you going forever. But we are raising awareness; so be as honest as possible.

Don’t focus on one video, one woman’s thought. Learn about Autism, educate yourselves.