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

The worry of raising a child who has mental health issues By Miriam Gwynne 

By Miriam Gwynne

This morning was not a good morning. In fact most mornings recently have not been good.

My child has health problems but I can’t call the doctor. There is no cream I can rub onto her sore areas, no plaster I can stick onto her cuts and calpol will make no difference. She worries me so much. 

I am a sensible grounded parent. I know what to do when my child has a sore throat, or a temperature or a rash. I know if she has an accident and needs checked out I take her to hospital. I know if she is unable to keep her food down I can take her to the doctor to make sure she is not dehydrated. I have a full first aid box at home with basic over the counter remedies for most things. 


But when it comes to her mental health I am lost. 

She cries far more often than you would expect from a child her age.

She is sad far more often than you would expect from a child her age.

She has no interest in life, or toys or doing much at all. 

She has little interest in food.

She has no spark, no energy about her, no motivation. 


If she was 28 instead of 8 I have no doubt she would be diagnosed with depression and given medication.
She may even be lucky enough to be offered counselling. But she is 8 so it is different. Mental health in children is so unrecognised, so misunderstood and far too often just ignored. 

People tell me things like ‘it’s just a phase all children go through’ or ‘it could be her hormones’ or even things like ‘she is manipulating you to get her own way!’ Stop for a second and think about that: imagine if we said that about adults struggling with mental health? 
I spend so much time talking to her. Sometimes we get to the bottom of things that are bothering her, sometimes we don’t. Tomorrow it could be something else again. 

That’s what people don’t understand: the simplest thing can send my child into such a negative spiral for months. 

She is over sensitive I am told. She is just an anxious child. She will grow out of it. 

I know she won’t though. She is a child with mental health struggles and it is likely she will be an adult with mental health struggles. That worries me so much. I don’t know if she will ever manage to live alone, have a job or raise a family. She jumps every time the phone rings and panics if the door bell goes. She lives on her nerves. 

There simply isn’t  the help for children like her. Children are supposed to be energetic, care free, loving life and eager to learn. We make assumptions that if a child is sad then the parents are at fault or the child is just naughty. We say that children who struggle to eat are just fussy eaters. 

As a society we are doing our children a real disservice by not accepting that mental health issues can affect children every bit as much as they affect adults. 

It was a hard morning again today. My child struggled to eat, to get dressed and to walk to school. I worry how she will cope with all that a school day demands when her mind is so fragile. I worry about how she is interpreting what others say when she is so sensitive. I worry if her anxiety will allow her to talk or eat today. 

Had she been going to school with a broken leg everyone would know to keep her safe. Had she been going with an asthma inhaler the staff would be protecting her. Instead she is going to school with mental health difficulties and no-one seems to understand. 

It’s that lack of knowledge and lack of understanding in society that causes me to worry most as a parent of a child who has mental health issues. 

Miriam Gwynne is a renowned blogger who has her own site where she discusses issues she faces raising two children on the autistic spectrum 

https://faithmummy.wordpress.com/

For more articles like this please visit:

https://m.facebook.com/theavengeruk/

My Letter To The PM About My Child’s Mental Health Got An Unexpected Response 

By Lisa Mulholland

I am an autism mum and I get ‘political’ sometimes. 

It is difficult not to be when current waiting times for an autism assessment in North West Kent is between 2 and 3 years due to NHS cuts and over the years has varied between 1-2 years.

This is frustrating and can really affect an autistic child’s life as diagnosis means children get support they desperately need in school. Well for now anyway as schools all over the country are having their budgets slashed, meaning many Teaching Assistants will no longer have jobs.

Terrible for the teachers but a disaster for the children who so heavily rely on support staff.

The school budget for my child’s school alone is also set to be slashed by £72,000 by the year 2019. And I dread to think about how many children will feel the fallout of this.

For me once I finally got a diagnosis for my eldest I was unaware that the battle had only just begun and it took 4 years from seeking an autism diagnosis to finding the right primary school setting. 
Anxiety, school refusal and mental health issues became a barrier to my son’s education and eventually his overall quality of life.

It started aged 6 with self- harm and progressed into suicidal tendencies by the time he reached the age of 10.

Although shocking, my son is not a one-off case. While autism itself IS NOT a mental health condition, 71% of children who have autism develop mental health conditions, according to the NAS. * 

Compare this to non-autistic children where the figure for developing a mental health condition is around 10% and you have a staggering 61% difference that cannot be ignored. ** 

When I had reached the end of my tether with new battles arising after two failed secondary school placements in the space of 3 months, due to my son’s panic attacks, self- harm and absolute emotional breakdown I put pen to paper. 

Children and Adolescent Mental Health Services (CAMHS) had rejected us from their service a total of 6 times, so we had an escalating mental health issue that no one would treat. 

I literally had nowhere to turn so when I was given a glimmer of hope of prospective specialist school that could cater to my son’s high academic ability, I was overjoyed.

There are not many schools like it and he was deemed too ‘bright’ for other specialist schools.

But he was initially rejected by the school, so another simultaneous battle ensued. Eventually they agreed to let me son have a trial day.

The night before the trial he burst into tears and said, ” Why do I have to be autistic, I just want a normal life, I just want to go to school and hang out with my mates” before having a panic attack and physically harming himself many times throughout the night.

That night I wanted to complain to someone. But I didn’t know where to start. So, I started with David Cameron who was the Prime Minister at the time. 


I was desperate, heartbroken and angry all at once but when I finished writing, I felt a sense of relief that I had got it off my chest.

I wasn’t sure what I wanted to do with it, but a friend of mine read it and was moved by it. She had a political group on Facebook and we decided to share it.

I wasn’t prepared for what happened next. 

My letter kept being shared and people started commenting about how they could relate to it and I was being spurred on to continue my battle by people I had never met.

Then I was contacted by a BBC journalist who was interested in my story. 

I was apprehensive at first, but after much deliberation and assurance from The BBC we agreed to do it. We felt we had nothing to lose and wanted to speak out about mental health and felt that is we could help just one other family then it was worth it.

The BBC staff came to our home so that we were comfortable and were very sensitive and respectful.

My son really opened up and the staff were so moved by our story that they offered him a treat to visit the studios and watch the editing process. The staff spoke to him about anxiety in the workplace and gave us some hope when we felt there was none.

We appeared on BBC Inside Out and the Health Correspondent took my letter straight to the Director of CAMHS Kent and Sussex Partnership.

To see my letter being addressed by the Director of CAMHS on the BBC was surreal but it encouraged other friends’ children in similar situations to speak out about their mental health issues too.

Just that alone for me feel like I had made a positive difference.

Just when I was about to lose all hope, a letter and a political group help
ed to give me a second wind to fight some more. It helped us push the services some more, fight for mental health treatment and fight for a school placement. 

We were then invited onto radio and Victoria Derbyshire to speak about our issues and 18 months later and talked to people who had influence over mental health services.

We are still in contact with the staff at BBC South East. They were personally touched by our plight and are now delighted to hear of the progress my son has made. They often drop us a line to ask how is he getting on.


He is no longer plagued by his anxiety (albeit still present) he now has a quality of life that everyone is entitled to.

The school listened to my case and gave him a chance. He is now the happiest he has ever been in his life because he is in a school setting that caters to his academic and social and emotional needs and finally got the CAMHS treatment he desperately needed.

He is excelling in subjects that I never thought he would attempt and he no longer has panic attacks and we are able to manage his anxiety and mental health issues.

None of this would have happened if I hadn’t been so compelled to ‘get political’.

I want to continue to make other parents in similar situations aware that the difficulties and frustrations many parents feel with a lack of services to support their children whether it be NHS waiting lists, CAMHS waiting lists or lack of school support is a political issue.  People need to be held to account and we should never feel silenced.

The buck stops with the government and sometimes direct action needs to be taken to let the voices of our children be heard. And above all we should never take no for an answer. 

Sources:

National Autistic Society “You Need to Know Campaign”

Mental Health Foundation

To read the actual Letter that was sent to the PM please click here: 

https://theavengeruk.com/2017/09/18/my-open-letter-to-the-pm-about-how-austerity-affected-my-childs-mental-health/