When My Child Acts Differently Your Judgement Can Make Or Break Our Day By Emma Ben Moussa

I’m not sure why, but all of a sudden I had the urge to write… you see I have been up all night and I’m covered in bruises and bite marks… but it’s ok because the person that does it to me isn’t doing it to hurt me, he’s doing it because he loves me and this is how he shows it.

Unusual I know but let me introduce you to Sami and hope that this may spread some awareness of autism so the world becomes a bit more understanding for him in the future. 

On the 27th May 2015 I gave birth to a beautiful second son and he was immediately different from my first, he screamed so much we were put in a separate ward, I thought wahey upgrade!

Sami was very loud, he spent most the day screaming, he could not be apart from me and my family felt very unsure about looking after him- so they didn’t and 4 years they still do not feel able to look after him for more than a few hours although they do love him with all their hearts. 

6 months in I remember shouting up at the ceiling asking what I did wrong, why isn’t he happy? (sorry neighbours). My first born had just started nursery and was a bit behind with speech and getting over excited easily, at least that’s what I thought, but despite the nursery trying their hardest to show me something was different with Aymane I was so wrapped up in my clingy baby that I did nothing. To be fair my health visitor believed Aymane was just over excited too. 

At 18 months my Sami started talking; he said ‘mum’ and ‘dad’ and even his cousins name ‘Jack’ but then within a month it was gone and he has never said a word since.

He started to try find other ways to communicate, if he wanted a drink he would throw a cup at me, if he wanted food he would guide my hand to the fridge but if there was something he wanted and I couldn’t guess it he would get so frustrated and start hitting his head on the wall or throw himself to the floor over and over again. 

At the 2 year review the wonderful NHS nursery nurse said “I’m sorry but we have some concerns here, we will come back out and visit you” and true to their word every month I saw a health visitor and the nursery nurse.

Let me thank them right now because without their 2 years of constant support I honestly don’t know how I would have coped, they were angels. 

Sami does not sleep, he just cant, maybe he will get 1 to 2 hours a night but then he’s up and when he is up, the whole family must be up.

When it was time for nursery they were straight with me from day one, Sami needs assessing. I already knew at that point that Sami was different, on the walk down to nursey he would try to run in the road, he would lick car tyre and fence posts and he would take peoples solar lights out their gardens so he could lick them. 

At 3 Sami saw a paediatrician and we sat there for half an hour, I told him about Sami not sleeping, smearing his own poo on the walls, lining up anything that can possibly be lined, having absolutely no danger awareness, not being able to talk, eating inedible objects, chewing on things that should not go anywhere near your mouth, cracking his teeth on rocks and he diagnosed him there and then:

AUTISM 

I think I cried for days, now, I feel silly about that.

Sami is a gift, a gift no one else is lucky enough to have. Sami loves me and he shows it intensely, he’s stuck to me like glue, his smile melts my heart and when he has sensory overload no one but mummy will do. You need to squeeze him so tight and block out this busy world and the feeling that I am this angels world, is one I was always treasure. 

I went to the library the following day, I read everything I could, soon it became difficult to leave Swanscombe because Sami likes routine. I believe he feels safe in his home town because Swanscomber’s are kind, they are accepting, a community I’m proud to not only belong to but have the honour of being their borough councillor.

I set up an autism play group in Swanscombe because I was tired of going out and being judged. Too many times I have had people tell Sami he’s too big for a pram and to get out and walk, or ask him what’s wrong with him.

Sami cant talk, if you get in his face and ask him questions he cant respond to, not only are you frightening him you are building up his anxiety so when he lashes out at you he’s not being naughty, he is in a meltdown.

When Sami is happy he flaps like a bird; it’s called Stimming.

He’s quite happy in his mobility buggy rocking backwards and forwards watching the trees and enjoying nature when all of a sudden a face is there, the face is talking to him, he doesn’t know you and he doesn’t know what you’re saying but the more he doesn’t respond the louder you get. Mummy tells you to please give him some space as he’s autistic and more often than not mummy gets told “oh he will grow out of it we are all a bit autistic.”

He most certainly wont!

He was born this way, he’s perfect. I feel so sorry for those wonderful autistic children who had to mask their autism to try and conform with what is seen as normal. 

Sami is now 4 and my baby is off to a wonderful special needs school in September called Ifield, where he will learn Makaton and we might eventually be able to communicate with each other.

We have a bright future ahead for him, it may not be the one I imagined but he’s getting all the help he deserves thanks to the wonderful NHS and Cygnets pre school.

My hope for Sami is that people become aware of autism, he’s not naughty, he’s not stupid.  He is truly amazing, battling sensory overload everyday! 

My eldest is my superhero, he adores Sami and sees him as special not odd and most the children around us do too, it fills my heart up seeing Swanscombe accept and include Sami.

We even get birthday invites from Aymanes friends for Sami, which is something I never thought would happen. 

Aymane is only just diagnosed with ADHD, I missed it, I never noticed because Sami’s care is so intense. I realised what Aymane’s flapping was when I learnt about Sami but his school do not see Autism in him so he just got diagnosed with ADHD.

I have one child that talks too much and one that doesn’t talk at all. I also have the most perfect children, they are my biggest challenge, my greatest achievement in life. They made me stronger than I can ever imagine. I can walk in to a council chamber with no sleep, covered in bites and bruises and think “I’m an autism mum no opposition can faze me. “

Although I have to admit I do occasionally lock myself in the bathroom just for some peace. 

My point in writing this is because, A I needed to get it out and B I would really appreciate people learning about Autism.

It’s a hidden disability, I also have a hidden disability and I find the judgement is sometimes harder than the actual condition.

If you see me being bitten by my child his not being naughty, something has made him anxious he needs to be close to his mummy, he needs to feel mummy, be completely enveloped by mummy so that he is safe again. I know it sounds strange but its part of Autism.

My boy is a superhero and I am a lucky mum.

What Autism And Self Perspective Can Feel Like By Various Writers

We asked two adults with autism how it can feel to have autism and relate to the rest of the world. Matt Lynch and an anonymous writer share those views and a poem.

By Matt Lynch

The Mask I Wear

🌸 🌸 🌸 🌸 🌸

A Poem By Anonymous

I am the one who isn’t enough

And

I am the one who is ‘too much’

The one chastised for things I didn’t mean

So much so that I have no self esteem

Apologise, take ownership of things that aren’t mine

Maybe because it’s easier than being wrong all the time

I stand a better chance of being liked

When my mask is on and I smile

But what about what others don’t see?

The tears and the turmoil, fear of being me

I cannot and will not prove everyone right

So

I swallow my words ands and sit tight

I sit on my hands so no one can see

That I pick my hands until they bleed

Pulling and pulling the strands of my hair

Surely that would make people stare?

That’s not acceptable in today’s digital age

Not the way a mother of kids should behave

So I put my mask on, push down the tears

Hope no one notices my long list of fears

No one can see; my cough is a disguise

Bile rising and the stinging in my eyes

When someone looks with a questioning frown

I just say “I’m tired” with a smile and it works for now

It covers the terror, the panic and the fear

Of the things I don’t make sense of and don’t want to hear

I don’t understand what their expressions mean

So I’ve learned to smile and look keen

Replay it all in my head while I am alone

All the bits I got wrong, I hope it didn’t show

It’s too much sometimes and I want to hide

I need to be better and work on my disguise

Because now my transformation is almost complete

Shy anxious girl to woman of the world

There are two me’s

The one that you see

And the other for those

Unlucky to get close

Maybe one day I’ll fully be able

To transform and in private be stable

Tomorrow will be better I tell myself each night

Tomorrow I will learn how to get it all right

To calm those butterflies

To stop those slipped beats

Until next time, until I am free

Free to be brave enough to be me

How you treat one percent of people really matters By Miriam Gwynne

According to The National Autistic Society around 1 percent of the population in the UK are autistic. That might seem like a tiny amount, and while I agree that it is very much a minority of people, I can not stress enough how important it is that one percent matters.

We are only every as strong as our weakest members and everyone is important.

At any point any one of us could find ourselves to be that 1 in 100 for any number of reasons.

Let’s put some of the struggles autistic children and adults face daily into perspective with other groups that are around 1 to 2 percent of the population too and see how important it is that we support everyone, even if they are only 1 in every 100.

Many people with autism face discrimination in employment.

Only 16 percent of autistic adults are in full time employment. Let’s look at that another way for a moment. Did you know that around 1-2% of the UK population have green eyes? What if only 16% of those with green eyes were in full time employment? I suspect that would make headline news, make the government concerned and initiate further research. Autistic people should count just as much as everyone with green eyes.

Many children with autism are denied the educational support they need to reach their full potential.

According to Department for Education figures for England there was a 35% increase between 2015 and 2016 in the number of local authority refusals to carry out EHC (Education and Health Care) needs assessments on children. Lets look at this another way: did you know that between 1 and 2 percent of the population have red hair? Imagine if a third of school pupils with red hair were refused the education support plan they needed ? Would we not be rightly angry about this? Autistic children count just as much as those with red hair. What are we doing to help these children?

Many children and adults with autism are bullied.

A recent survey in the United States found that 63% of children with autism reported being bullied, with many more unable to say due to communication difficulties. No-one should experience bullying but let’s put this in perspective again: 1 to 2 percent of the UK population are vegetarians. Imagine if two thirds of them consistently complained their were bullied because they were in a minority group? Why are we more respectful, tolerant and even accommodating of vegetarians than we are autistic people? How we treat one percent of the population really does matter.

Many children with autism are excluded from school.

The most recent national statistics show that, between 2010-14, there was a 35% increase in the number of autistic pupils excluded for a fixed period and the number of pupils permanently excluded has doubled over the last three years. What if we took another group of people who happen to be in the 1-2% in Britain and used the same statistics? What if there was a 35 percent increase in people with celiac disease excluded for a fixed period from school? Yes they are very different conditions but they both represent a similar percentage of the population. Autistic people deserve the same support as those with celiac disease.

People with autism often face sensory issues that make daily life a struggle.

Thankfully we are getting more aware of this through campaigns such as the too much information campaign by the National Autistic society and seeing an increase in autism friendly shopping times and businesses making accommodations.

A similar proportion of the UK population have food allergies and, of course, despite them only being around 1-2% of the population we are, as a society, accepting the seriousness and concerns they face and starting to address this too in the form of clearer packaging and better understanding.

My point is that everyone matters.

I am not autistic but my children are. They may be in just 1-2% of the population but so could anyone of us if we look at different things like hair colour, medical conditions, blood groups, income or any number of other factors.

1% matters. 1% of nuts in a recipe could kill someone.

1% of your house collapsing could be fatal if it was in a supporting place.

1% battery in your phone may be enough to dial 999 and save your life.

1% is important. How we treat 1% of our population matters so much.

For the sake of my children and all those others in the 1 to 2 percent of the population who are autistic please respect everyone and support autistic people to lead the best and most productive lives they can.

Everyone matters. In fact the less a percentage perhaps matter even more because it makes it different, unique and special, exactly like my children are.

How Autism Awareness Changed My Life By Lisa Mulholland

I am not the same person I was 10 years ago. Before the word ‘autism’ became a reality in my house.

10 years ago my eldest son was diagnosed with autism.

10 years ago my heart broke in two.

10 years ago I had a very steep learning curve and…

10 years ago a whole new world opened up to me; my life changed for the better. I just didn’t know that at that precise moment in time when the paediatrician uttered the words “ Your son has Autistic Spectrum Disorder “…

I nearly fell off my chair.

It shouldn’t have come as a shock. The signs were all there from when he was a baby.

He lined everything up. Sounds were painful to him. He could not get on a train that had windows that looked slightly different to what he was used to. Certain materials were a no no. There were so many signs and perhaps I was in denial but all I saw was my intelligent, unique son.

I didn’t see a ‘problem’.

As a working single mum I would struggle to get him to his childcare before tackling the daily commute into London. I didn’t know what autism was. Sure I’d heard about it. I’d seen the film ‘ Rain Man’ and my son was nothing like that!

But what would I know? All my friends were city workers, civil servants, teachers. None of them had children. I had nothing to compare him to.

So that day at the hospital I burst into tears. Alone and scared . I didn’t know what it meant . A million questions ran through my mind at once!

There was nothing ‘ wrong’ with my boy surely?

And so it went on. The denial. The upset. The tick list of things that he would ‘ never do’ that I now crossed off in my mind.

Little did I know that the list of things I wanted for my son were just preconceived ideas based on my own fuzzy image of how I wanted things to be .

Playing Football, birthday parties, friends coming over, even making friends: all of these things I now crossed off in my head.

All I could see was what I thought autism would take away from him. I didn’t see what it gave him.

Yes he wasn’t interested in football! But guess what? He loved space!! And he could tell you everything about the Big Bang theory and list every single Thomas the Tank Engine train in alphabetical order.

Yes he struggled with friends but he had two. Ok they played alongside him (not with) most of the time but mostly he was happy in his own world. I was just an outsider looking in. Judging by my own standards. How did I know what he enjoyed?

After a while I started to see my son again.

For the first few months every funny little quirk he had, I looked at in a different analytical light. But when I accepted that autism was a part of him and what made him so funny and unique: I saw him again. I saw him for who he was.

The main problem I had with autism was not actually the autism.

Ok the sleepless nights and the meltdowns are very tiring. But when a lovely support worker at the school put me in touch with other parents and organisations that taught me about autism and how to prevent meltdowns and understand I changed my strategy. And it helped. I realised that he couldn’t change so I had to. Slowly but surely I made breakthroughs.

I embedded visual supports, countdowns and prepared him for changes, I explained the what and the whys of the world to him and his anxious, active little mind would settle.

The main problem with autism for me came from a lack of understanding with the rest of the world.

The dagger looks I would get from other parents.

The stares in the shop if he got over stimulated and would lie on the floor.

The school teacher who didn’t understand but wanted to.

And so I realised the key to unlocking my son’s potential and creating a happy and understanding world for him was to forge it and to carve it out by myself.

Explain to the people in the shop.

Talk to the other mums and explain to them too.

Be upfront with the teacher about the difficulties at home.

Look for solutions together.

I am not going to say this was a miracle solution but it helped. I had to swallow my pride and calm my own anxiety and lump it. Something I had never done before. But I had to do it for him. He came first now. Not me.

And it paid off. The parents would smile. They’d show understanding towards my son and that filtered down to their children. I found a group of friends who would listen to me and in the end the teacher and I would work together and put on a united front to my little boy.

So when I went into battle over school placements and navigating the very complex system of obtaining a suitable education for my son, it became easier to do because I found a tribe of supportive mums and autism mums. And we kept each other sane. And picked each other up.

When my third child presented with a more severe form of autism I was calm. I’d already fought battles both outside and inside my head.

I’d already found a way to celebrate the small tiny things.

I knew the system inside out and I knew how to get support right away.

I knew that comparing him to neurotypical children would only break my heart so I accepted instantly that he is who he is.

And do you know who helped me put it into perspective? My eldest autistic child.

He was just 11 when told him that his youngest brother Finley had been diagnosed with autism and global development delay.

His response amazed me then and still does now 2 and a half years later:

“ Mummy don’t worry!!! Everyone travels on different roads. We all reach the same place in the end. Most people take the motorway. I take the A roads mostly. But Finley is just off roading. We all get to the same place and he will get there too so don’t worry”

Well what could I say to that?

So! No, I am not the same person I was 10 years ago.

I am a much more positive person these days. Autism has taught me that the little things matter . It has taught me to think outside the box and look at everything with childish curiosity. It has taught me what is really important in life and I couldn’t be prouder to be an autism Mum.