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.

Why Today is A Day of Celebration and Victory For People With Invisible Disabilities By Lisa Mulholland

Today is a milestone for people with invisible illnesses and conditions. Today people with invisible disabilities are finally entitled to apply for a blue badge which entitle them to use the disability parking bays.

Until today you could only apply for one if you have a serious physical disability that impedes your ability to physically walk. But now from today, you can apply for one if you have autism, or another disability that is hidden.

For families like mine this is going to dramatically improve the quality of our lives.

That may seem like an extreme statement but please let me explain.

Days out with any children can be trying. But if like me you have two children with autism; every day events and days out can be dangerous.

My two boys react to noise. They have a heightened sense of hearing, no sense of danger, and an inability to predict circumstances.

We simply cannot travel on public transport.

There have been so many times that my eldest boy has nearly been run over, fell down the gap between a train and the platform, and had panic attacks in crowds.

When he was younger I used to commute into London to work. I’d have to drop him off to his childcare facility on the way. At this point I was unaware that he was autistic.

A common daily situation for us would be where we would get onto a train and then he would panic. He would run as soon as we got on the train and need to find a seat quickly. He had to sit down before the train doors made a beeping sound to indicate they were closing. For him that sound was frightening and deafening. So for him, if he was seated he felt more able to control his anxiety about it. He would still scream but he felt contained. It wasn’t always possible to get a seat and often the trains would be crowded, so his fight or flight response would kick in and he would either start lashing out at people or objects around him to get to the seat or run into danger to get off the train.

A common occurrence would be where in his moment of panic he was unable to see the large gap between the train and the platform, he wasn’t aware that he could fall down that gap, or get stuck on the platform alone.

Many times, kind strangers have saved him by grabbing hold of him and prevented him from falling down the gap.

Another time he ran out of the station and directly into the path of oncoming traffic. Another occasion he sat on the floor in the train station frozen to the spot, and I had to get a police officer who happened to be standing by, to help me carry him onto the train as he was too scared to board. We had to cover his ears and eyes and seat him.

The list of incidences likes this is endless and it would take a good few long blogs to list all the near misses we have had.

In the end I had to stop using public transport altogether. It was too dangerous and stressful. The panic attacks became more frequent and as my son grew in size, the general public were less accommodating .

A large 15 year old who is 5ft 10 tall is rather hard to ‘grab’ and he is difficult to manoeuvre. A child of this size who physically looks just like his neurotypical counterparts and starts behaving erratically is at best going to raise a few eyebrows and at worst is going to invite some very unwanted attention. Not to mention that it is embarrassing for him once his panic attack is over and he sees everyone staring, tutting or worse.

In the end he started to refuse to leave the house and had panic attacks every time he went outside. We were house bound for a long period of time and slowly developed a significantly lower quality of social life than other families with children of his age.

So with therapy and driving lessons I slowly started to claw my life back and I started to drive everywhere .

This made it slightly easier to attend days out. But only slightly.

Nowadays we park up as close as we can, and walk to the event or venue we want to attend. This still involves walking long distances, and heavy planning to keep him and his brother safe from the road.

The noises, lights from vehicles, hustle and bustle from surroundings and crowds can be painfully scary and triggering for my autistic children.

My youngest son is more severely autistic and is still in a buggy despite being 6 as he has global development delay and has the mind of a 2-3 year old. To complicate matters more I should note that I have an invisible condition called Ehlers Danlos Syndrome, which means (amongst many complicated problems) I can’t walk very far even on a good day.

Just yesterday we wanted to enjoy the summer holidays by going out into London for the day. I had to pay heavy parking fees to try and park closely to the place we visited. We parked as closely to the venue as we could, but it was still very dangerous.

And just last week I had to forego a festival due to a lack of parking. There was no parking near the festival except for disabled parking (which I wasn’t entitled to use last week) so I had to miss the event.

If I had a blue badge it would have meant that we could have parked closely and got the event safely. Instead I had to miss it and let down friends and family once again.

There are so many examples like the ones I’ve listed where as a family we have missed out on events due to not being able to drive or park there.

Over time it can really impact on levels of happiness, friendships ( people give up inviting you out if you have to cancel quite a bit), self esteem and ability to socialise: all of these things are so crucial to people in general to contribute to a healthy and happy life. For people with invisible illnesses and disabilities who already suffer from the various conditions and the limitations they bring, it is even more important that they can access events, and normal day to day things like shopping. It’s crucial that I am able to take my sons shopping to help teach them life skills, but more often than not it’s just not safe, or too stressful to do so.

But today, as I fill out my form for a blue badge and am able to tick the criteria that actually applies to us, I feel like a weight has been lifted. The possibilities for us to access the world have now increased infinitely and I am so happy I could cry.

I will be able to take my boys out on my own, without having to have another adult present, or having to worry about them walking into a moving vehicle just going to the shops. I won’t have to spend hours trying to find eligible parking and pay hefty fees or try and navigate a route that minimises the possibilities of meltdowns, or real danger to my kids.

Today I feel like our family’s disabilities are being recognised as real, and that it’s the first step to a wider acceptance of invisible illnesses as a whole.

The world is our oyster and I look forward to so many more adventures!

Autism And Transition To Adulthood – Why It Was So Daunting By Matt Lynch

Eight years ago I was faced with the nightmare that every autistic person dreads – leaving school.

The days of only having to turn up where everything else is decided by someone else was rapidly coming to end.

The thought of having to somehow find a job, or more realistically claim benefits and sit around being more and more depressed by the day was only becoming more of a reality that I pushed to the back of my mind.

Procrastinating wasn’t going to help, but as nobody had the answers I was looking for it was the only option I was left with.

Before I knew it the fateful day came and went without much ado.

I remember sitting in the car on the way home looking at the lampposts fly past and thinking “well this is my life done”.

My brain was just full of little bubbles of information, floating around and bumping into each other, and trying to think about this only made it worse.

Thinking of anything would just burst the whole lot at once, which as you can imagine made finding a solution to any of the problems impossible.

As I’ve got older, I’ve learnt to just accept many of the problems and deal with the ones that I can do something about, as there’s no point in worrying about things you can’t do anything about.

However, in 2010 and aged 18 this just simply wasn’t possible.

Today I volunteer for the National Autistic Society local Dartford and Gravesham Branch, local NAS run school Helen Allison and am an autism advocate on a local steering group for Autism; giving advice to local professionals.

It has been a gradual increase in involvement for me and it helps that I am surrounded by people with an understanding of autism.

With the local support groups I help give advice to parents with children with autism, having been there myself and hope to continue to do this to make a position be change for other children and adults on the spectrum.

Matt is the Social Media and Web Officer for the local NAS Branch that he helped establish. Despite the Branch being less than one year old it has been awarded the status of Top 5 NAS Branches in the country. Matt gives talks on autism perspective for the Multi Agency Autism Group.

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

In This Together – Anonymous

To my darling boy,

I couldn’t save you today. I couldn’t be there to hold you as the tears fell from your cheeks or make it all better.

Since you were a baby we knew you were different, I remember telling the doctor how hard it was to step into your world and how you wouldn’t let us in. The diagnosis of autism actually came as a relief in the end.

Things moved fast after that, school managed to put in place support, we learned how to communicate with you and how to help you feel safe.

However the one thing we couldn’t prepare you for is the heartache of watching your nursery friend now run off laughing with other friends as they look at you with pity, neither of you knowing how to step into each other’s worlds anymore.

Their needs and communication have now surpassed what you can offer and inevitably they have moved on.

You try and join in but it’s just too much, you cannot understand the invisible rules of making friends, it’s so hard and complicated and eventually you walk away lonely and heartbroken.

The world you were once a part of, the children you once called friends now moving further away as their understanding and expectations of what a friend is changes and you are just not able to keep up anymore.

I come up to you, I wipe away the tear and kiss your perfect cheek. I check my phone, no messages and just a Facebook update of a mum I used to spend time with, she is now busy with the other mum’s and it seems their children are all having a sleepover tonight and making cookies.

I silently say goodbye to yet another friendship and thank god you do not have social media yet.

I turn to you and tell you that I love you, that we will always be in this together.

I remind you that you have so much to offer this world, that you can point out the smallest detail in something that other people cannot see, you are loyal and focused when something interests you and because of that you will excel in your chosen field.

You rarely judge other people or get caught up in social expectations, you accept a person for who they are and would never lie or cheat them.

You are passionate, you live for the moment and despite common belief actually have the biggest heart I know!

But mostly importantly, you are unique and beautiful, and even the loneliest butterfly eventually spreads their wings and finds their place in this world.

In the meantime my darling boy I will always be there for you, we are in this together and I will always be your best friend.

I will help you understand this world and see the beauty within it.

I will teach you the things you struggle to see and together we will make sense of it.

I will forever walk by your side and you will forever have my love.

Love Mummy xx

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.

13 and Autistic: How Sensory Overload Feels For Me and Some Helpful Tips By Nathan Hillman

By Nathan Hillman

What is it like having autism? 

Well, what is autism? 

Autism is a spectrum condition that can make people hear and see the world differently to others without autism. 

Everyone has struggles in their daily life and autistic people especially struggle. I have autism and so do my two cousins (who will remain anonymous).

I can definitely say it does have its’ downsides. But not everything is bad about autism.

How do I feel in busy places with autism? 

Autism can affect people’s sensory processing and not everyone with autism are the same. 

Here is how it feels for me. “It feels like my head is going to explode” “My heart starts racing” and “My ear drums feel like they will pop.” My ears are very sensitive so I cannot stand it when my mum puts the hoover on. Autistic people can seem like they are being disrespectful but they are not, They can have meltdowns sometimes because of sensory overload.
Autism is just another word for ‘little sh** syndrome’… I have heard people say this but IT IS NOT! I hate it when people say that!! 

People with autism can have meltdowns but they cannot help it. I’m sorry but it is just the way they are, there is no cure but there are coping strategies that I would like to share:

Focus on your big toe. Sounds strange doesn’t it? Nope, when you focus and move you right toe, you are concentrating so hard on your toe that you cannot focus on your anxiety anymore.
Count to 10 and breathe. This is a common one, this does help a lot.

Exercise more often. It has been proven that exercise can release happy chemicals in your body, so do some yoga or go for a run!

Meditating. This is the second easiest one (as counting to 10 is the easiest) get a meditation CD or look up meditation music on youtube and just lay or sit up straight, and breathe…. easy right?

Eat a healthy and balanced diet. This can help with mood swings and depression as well.

I hope some of these help you!

There are certain materials I do not like and this is common with most autistic people. There are a lot of parents that get worried about their child having autism and the best advice I can give is to research autism and go see your GP for advice. 

Now onto the good things! 

Autistic people are very clever, I think that autistic people should follow their dreams and do what they want when they grow up. I want to help people, that’s why I am am writing this.

I hope I have helped some of you! 


For more information on autism please visit :

http://www.autism.org.uk/about/what-is/asd.aspx