The One Thing I Want in Life for My Autistic Son

My son has lots of difficulties in life. He can not talk, he can not read, he can not write. He struggles to join in anything others are doing, preferring instead to flap at lift doors opening and closing or turning hand dryers on and off repeatedly. There is a long list of things I would love him to be able to do including communicate his needs, be more independent, understand what people are saying to him or even use cutlery.

Yet two days ago a photograph sent home in his school bag made me suddenly realise that all I really want for my son is one thing: to be included.

My son attends a school for children with severe and complex needs. Many of his ‘friends’ are wheelchair users, or non verbal or perhaps require to be fed differently via a tube. Some have behaviour challenges and others have genetic conditions or learning delays, but they all have unique and wonderful personalities. The small class sizes and increased staffing are necessary for all of the children, most, if not all, of whom will require support all of their lives.

However his school building is modern and custom built. One of the most remarkable things about the building is that it is shared with another school. This is a new and innovative idea where I live but one that seems to have huge benefits not just for complex needs schools and mainstreams but for schools of different faiths too. The building announces proudly to the community that we are all one and we are all the same even if we appear to others as different.

I have to be honest and say I would rather my son did not have some of the physical and cognitive challenges he faces daily. I wish he could speak, I wish he could read and write not because it would make me feel proud as a parent, but more so because it would benefit him so much. I wish he could attend mainstream school like his sister does because he would be known in the community and have friends locally he could play with, not because I have any issues at all with the challenges he faces. He is loved immensely for who he is but it would be beautiful if he was with his peers much more rather than separated and educated so far from home.

So getting the photograph sent home with him spoke so much to me. The photograph shows my son with children from a mainstream school playing a game. He is being supported not by specialist trained teachers or support staff but by another child. He is being included.

That is what I want above anything else for my son. I want him included as equal in society.

I don’t want him pitied.

I don’t want him ignored.

I don’t want him excluded.

I don’t want him mocked.

He has had enough of those things already.

Yes there are things my child can’t do, but there are things every one of us can’t do either!

The children in the photograph had no need to know the list of diagnosis my son has. They didn’t need training in the latest model of therapy for those with autism or have to have hours of training in physical therapy. They didn’t see a child who can not speak or who is unable to read. They saw a child called Isaac and did what they could to have him join in to the best of his ability.

See my child. See him for who he is and not all the things he can not do. See him as a child who is worthy just as every other child is. See him as a peer.

Please let this photograph help change society. Please let this be the generation who sees people as equal.

Please give me hope that the one thing I want for my autistic son may actually happen one day.

Maybe you can’t include MY son but you won’t have to look far for a child who may also have autism, or a genetic condition or who struggles. Send them that party invite. Encourage them to join in the game. Offer to push them on the swing at the park.

Every act of inclusion is an act of love. I promise you it is worth it. I promise you everyone will gain from this.

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What if his challenging behaviour is actually a cry for help?

If you were walking home in the dark one night and heard a female screaming for help would you see those screams as challenging behaviour?

What if you were in a hospital and heard a child cry? Would you see that as challenging or would you be more sympathetic?

We all understand the lady screaming on a dark night is desperate for help. We all understand the child crying in hospital is scared and does not understand what is going on around him.

So why when my child with learning difficulties and autism screams and cries does everyone suddenly see it differently?
Professionals have labelled my child as having ‘challenging behaviour’. He kicks, pulls hair, scratches, bites, screams, cries, throws himself down stairs, throws objects in temper, head butts the floor, and attacks people. He is now almost my height and a third of my weight. He is only eight!
He can also be loving, gently, funny, happy, warm, lovely and wonderful. 

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Like the lady screaming in fright on a dark night there are times he is scared. Right now he is terrified of open doors. His anxiety soars making his adrenaline pump through his little body to an extent he has to react. His challenging behaviour is his way of communicating fear and anxiety.

Professionals tell us to restrain him, speak to him calmly and discipline him. Would we do this to the lady screaming on a dark night? Most people would in fact rush to help her yet people seem to rush to get away from my son when he has the same feelings of life being out of control. Both scream…both are full of fear…yet we call one challenging behaviour and the other simply a means of communicating for help in a desperate situation. Perhaps we need to realise both are the same?

Like the little child we hear crying in the hospital ward who is worried, in pain, and not understanding what is going on around him so too is my son at times when we take him places he isn’t familiar with or he doesn’t want to be there. Why do we have sympathy for a little child in a hospital ward yet look in distain at my son when he cries at the supermarket aisle? 
My son has no speech. Behaviour is his way of getting his message across. How can he communicate that he did not want chicken nuggets for his dinner? One way is to throw them at me. Instead of punishing that behaviour or seeing it as challenging I prefer to see it as communication and frustration at not being able to say what he wanted. I don’t want to encourage his behaviour but until I can teach him a better way of communication I have to understand his method of ‘speech.’

When he drags me out the door and onto the street some professionals feel I should ignore him or restrain him. How then would he be able to show me the reason for his fear?


Yes I would love him to be calmer, happier and less physical at times. I do discipline and teach him as his difficulties allow but I want society to stop seeing my child as simply having challenging behaviour and see him as a child crying for help exactly like a woman on a dark night or a little boy in a hospital ward.

 
Perhaps the challenge in his behaviour is actually a challenge to society? What if the challenging behaviour is actually a cry for help that we are all ignoring?

 
Perhaps in that case we need to challenge our own thoughts and not his behaviour?

Why being ‘autism friendly’ is much more than a gimmick

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Did you know that last week Britain’s second busiest airport (London Gatwick) became the first airport to be ‘autism friendly’?
Where you aware that last weekend the international toy retailer toys r us held an autism friendly event throughout the uk?

It seems the whole concept of being autism friendly has taken wings and grown and it is now common place to hear of autism friendly cinema screenings, autism friendly museums and libraries, autism friendly times in trampoline parks and soft plays, and even autism friendly Santa’s grottos!

A quick glance online and I even found autism friendly cruises!

But what is this autism friendly stuff all about and is it just a marketing gimmick?

According to Wikipedia Autism friendly means “being aware of social engagement and environmental factors affecting people on the autism spectrum , with modifications to communication methods and physical space to better suit individual’s unique and special needs.”

In practice for most places this means what the retailer Asda advertised recently as a ‘quiet hour’ where all unnecessary noice is reduced to avoid too much sensory stimuli. Autism friendly cinema showings for example have dimmed lights rather than complete darkness and a more relaxed atmosphere.

However there is much more to this than just turning the tannoy down! The National Autistic Society now has an award for being autism friendly but to get this prestigious award retailers and towns or businesses must do much more than just reducing noise or creating a more relaxed atmosphere. Criteria for their award includes having autism friendly customer information, having staff and volunteers who have an understanding of autism, making the physical environment more autism friendly, having the customer experience autism friendly and promoting understanding of autism. For anyone to go to that level is far more than just a marketing gimmick; it is costly, time consuming and takes a lot of motivation.

So why do it? And why single out autism?

What if I told you there are around 700,000 people in the UK living with autism – that’s more than 1 in 100? If you include their families, autism touches the lives of 2.8 million people every day. 79% of autistic people and 70% of families said they felt socially isolated.50% of autistic people and families sometimes don’t go out because of concern about people’s reaction to their autism. Autism friendly events have a potential to attract a huge market for businesses and towns as well as showing tolerance and understanding that reaches many more besides.

What about other disabilities?

This is the beauty of autism friendly. Autism is a huge spectrum involving difficulties to varying degrees with communication, social interaction and social imagination. Some will have learning difficulties or mental health struggles. Autism friendly events are there for everyone regardless of diagnosis or difficulty. They are as accessible to the Down syndrome community or those with genetic disorders. They are accessible to those with physical difficulties or challenging behaviour. No-one will be asked for diagnosis or membership to access any autism friendly event of any kind and therefore what is helpful for those with autism is as open and accepting for anyone facing any difficulty. We are all in this together.

img_4175So why do I care? I recently took my severely  autistic son with me shopping. He made noises, flapped his hands, laughed loudly and generally had a wonderful time watching a lift door open and close again. He can not speak. He has the mental understanding of a baby despite being 8. He is still in nappies. As the lift door opened a stranger looked at my son in disgust and said “I have come here to do my shopping, not see the likes of THAT!” I cried. It took me a long time to feel I could ever take him out again. I am not alone.

When Victoria Holdsworth approached toys r us in 2014 to ask if they would consider doing an autism event to help her son Joe she had no idea how much the entire autism friendly concept would take off. We owe her so much.

Now there are entire towns looking to become autism friendly. Liverpool has a huge campaign and councillor Mandy Garford from Dartford has a determination to make Dartford autism friendly too.

This is much more than a gimmick. This is an entire movement expanding across the UK that says to autism parents like me ‘we see you and we care.’

Do you care too? Please help by sharing this blog, supporting autism awareness and thinking about how YOUR town, business or place of work could also be autism friendly too.

Maybe one day less people will then call my son a ‘that’.

Being autism friendly is much more than a gimmick..it is a monumental change that makes the world much more accepting to children like mine.

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