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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: [M]ortality

We face our own mortality every day.

We know that if anything were to happen to us he would be left – no one can understand his words better than us, no one cooks his food like us, no one knows how to do his schedule, plan his meals, his table, his homework, his music, his clothes, his haircuts, his nails, his teeth, his doctors, his medicine like us. No one can calm him down like us, no one can explain things to him like us, no one can negotiate with him like us. I mean, they can, but not like us.

So, what happens when we are gone? What happens when he gets average care? What happens when life  takes your plans and throws them back in your face?

What happens when your dad has a heart-attack?

456674_10151049641195030_165435870_oThe world stops, looks at you and shatters right in front of your eyes; the earth is swept from under you; time stands still and your life past, present and future is ripped apart; just like that, in an instant. For me, because I’m so far away, it was the first time I thought of quitting it all and going back. It was my worst nightmare come true; in the middle of a course, in debt, alone, what would I be able to offer my family? How do you explain to a 16-year-old autistic boy that his daddy was in intensive care for a week? How do you explain the concept of loss to him?

Families of Autism live with these thoughts every day, we don’t have a cure and we definitely do not have answers.

All we want is awareness. We want you to know, we want you to learn, we want you tell people about Autism; because when we are not there, we need to know that they will be cared for, they will be accepted, they will be given opportunities and the chance to grow, develop and be part of society. Because when their world is turned upside down and they don’t understand why we need our society to be equipped and ready to welcome them and support them.

Because we don’t want to be their entire world, we want the world to be their world; if that makes sense.

The holidays are approaching, maybe your gift this year can be reading one article about Autism, having a conversation with someone onthe spectrum, talking to your children about that kid in school and why he ‘acts different’. Your five minutes of being open, reading and understanding may help change a kids life.

Read, ask, learn about Autism; fear ignorance more than mortality.

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The [A] Word: Look for the [S]igns

One of the most important things you need to understand about fighting Autism is that it needs to be diagnosed as early as possible. Early diagnosis means early treatment; development of social skills; development of speech; creating a life and environment for them in which they can grow, not be restricted.

Red Flags

Not responding to their name by 12 months of age;

Not pointing at objects to show interest or curiosity;

Difficulty in establishing eye contact;

Not participating in ‘family time’; and want to be alone

Getting agitated in loud situations or in crowds;

Having trouble accepting change in their environment;

Having trouble expressing hunger, thirst, pain;

Have extreme reactions, to music, smell, food, colours, or the way their clothes feel;

Impulsive;

Impassive;

Short attention span;

Temper tantrums;

Or has flat or no facial expressions in different situations;

Delayed speech and language skills;

Repetition of actions or sounds over and over again;

Obsessive behaviour with one toy, or object, for long periods of time;

Hand movement, rocking of body, high energy and other self-stimulatory behaviours;

Or no energy at all, some kids are completely closed off;

I remember my cousins being so curious when they were infants, so interested in everything going on in the world and the people around them. Chris was interested in things around him but it was smalle10173765_10152395220290030_5414277748163382939_nr things like he didn’t look at us when we spoke to him, he didn’t want to play with me he’d rather play with my things by himself, he would throw tantrums when he was thirsty but couldn’t tell us or point to what he wanted.  For example, a child might be able to read long words but not be able to tell you what sound a “b” makes. When he grew up these things changed because of the early treatment he received. There was a year when we couldn’t hug or kiss him without him getting mad; there was a year of repeating the sound “ooh” every night before bed until i said it the right way, and most of the time i didn’t.

 

Repetition is huge with Autism. Actions, words, sounds, motions which can involve a toy, their body, an object, a person. These action are repeated over and over again. For instance, Chris likes to run up and down a room, when he’s happy and repeatedly flapping their arms, shake his head or make certain sounds. I’ve mentioned before how he likes to play with whipped cream and white flat-beans for hours; its the sounds, the feeling, the safety of repetition that draws him in; these activities are known as self-stimulation or “stimming.”

By their first 12 months a toddler will interact with people around them, by looking people in the eye, copying words or simple gestures like clapping and waving. You would expect to play peek-a-boo with them or interest them in playmobil toys; me and Chris played hide and seek sometimes, but it was mostly the case of me hiding and him finding me, or not knowing what had happened and getting on with a game by himself. We played peek-a-boo but he mostly looked at me like i was insane, there were times when he enjoyed it though. That’s another thing about Autism, they might close themselves off and then there’s this moment where you get to glimpse into their world, or they give you a look, a smile they have never given you before, and its beautiful.

Each person with ASD has a different set of social and communication skills; some speak, some don’t, some can but only some words, some can but cannot pronounce letters, some can write essays, some go to university. Don’t assume that Autism doesn’t speak, don’t assume that Autism doesn’t want friends, don’t assume that Autism doesn’t like handshakes.

People with ASD might have odd sleeping habits. They also might have moods swings or unpredictable emotional reactions. For instance, they might laugh or cry at unusual times or show no emotional response at times you would expect one. In addition, they might not be afraid of dangerous things, and they could be fearful of harmless objects or events.

Remember that Autism is a spectrum disorder, a child, or adult, will not have all the symptoms, or they might. That’s the thing about Autism, it keeps you on your feet; for the rest of your life.

Don’t be scared, don’t sweep it under the carpet.

Learn about it, educate yourself about Autism – get it diagnosed.

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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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The [A] word: [T]ired

Tired of being up all night.

Tired of feeling helpless.

Tired of not feeling good enough.

Tired of feeling like we make no progress.

Tired of being ignored.

Tired of being excluded.

Tired of people staring.

Tired of being treated like we are different.o_dente_de_leao_da_consciencia_do_autismo_deseja_o-r079a3806e36c40388746113b553c5e46_wvw_8byvr_512

Tired of being to comply to society’s expectations.

Tired of being compared to ‘normal’ kids.

Tired of people not understanding.

Tired of screaming.

Tired of trying to make them keep up with society’s latest definition of ‘normal’.

Tired of being stereotyped.

Tired of people who don’t understand Autism.

Tired of people who don’t make an effort to understand Autism.

Tired of people drowning in their ignorance and prejudice.

Tired of the consequences this has on our kids.

Tired of the pity.

Tired of assumption.

Tired of not being heard.

 

You can be tired, but you have to never give up; you can fall, but you have to get up. Make them listen; make them see; make them aware.

We, the families, have only one wish – help us make it reality & learn one new thing about Autism.

 

*Want to make a difference? I know you