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 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.

Mental Health And Me By Lucy Robinson

At 17 I moved out of home. Within a year, my Dad & Step Mum who I previously lived with emigrated to Canada. My Mum lived in Wales. I was alone in London, with the world at my feet. I was ready.

…Or so I thought.

I bought a flat at 18, working in building maintenance. At 21 I fell pregnant; not ideal, unemployment and repossession ensued with me ending up – after lengthy process – in a Housing Association flat.

I refused to become a statistic of another single Mum on benefits.

Then in 1997 Labour got in to government – there was hope!

At this point I decided my career had to work for me. I went from working on a help desk in 1999 to managing engineers, to managing contracts. I did day release university and got qualified.

I started to manage bigger contracts, better contracts, profit margins increasing.

I was bold, brave and very good at my job.

In 10 years I went from part-time admin earning £10k to Projects Director in a multi-million pound engineering company, commanding a salary of £80k a year, managing literally hundreds of people.

I was now married with 3 children aged 13, 4 & 3. My stress levels were through the roof: I was being bullied at work (which most who knew couldn’t fathom) and my soul mate was dying of cancer.

It was a rollercoaster.

My soul mate died, work paid me off in a compromise agreement and then, just as I couldn’t get lower, my husband left.

It’s OK. I’m the breadwinner, I have child care, a cleaner, money… I can do this… NO.

No you can’t, not without a support network, which I didn’t have, I had opted for a career.

I was about to learn the hardest lesson.

I CAN’T DO IT ALL!

I lost 4 stone in as many weeks and never slept, apparently.

I have no recollection of 2011/12.

I still went to work every day, my kids were fed and clothed and attended school – in no small part thanks to my long-suffering teenager.

No one knew.

I saw not a cloud move, not a raindrop fall, didn’t taste or feel anything at all in this time.

I didn’t hear my children laugh or cry and from what I understand behind closed doors I was a vile ball of negativity and bitterness. I’ve no idea how my three beautiful babies coped while all I knew was blackness.

I sold my house, my beloved BMW convertible and got divorced. I started to regain what was missing and came to discover I was moving home.

I moved to Kent, I can’t quite tell you why; I do know rent was cheaper and I was born there which I assume took me back.

The moment I moved I could start to feel the ground under my feet (literally).

I saw I had an old ford Mondeo, my teenager was occupied as much as possible and we should all understand why, I saw my younger children cower from me and I was in so much physical pain it was hard to think.

I couldn’t fathom it… what was happening?

My hands didn’t work properly, I was physically sick most days and getting my children to school was a task. I had to have 4 operations: one on each wrist, one on my bladder and one on my throat. I had also gained a hiatus hernia and degenerative disc disease in my spine, not to mention the complex neurological disorder (nerve problems)…

But I’m bold and brave and very good at my job, I’m respected and established how could this happen?

My Doctor was incredible. I arrived gripping onto his desk, shaking, crying, scared and justifying that I was an intelligent, capable human being but I just needed help.

Please help me.

He did.

I went on antidepressants and got to know my children again. Did I mention autism? Yes we are an autism friendly family; not helpful if your Mum is having serious mental health issues.

I tried to go back to work, similar level but local on £60k. I couldn’t hack the pace, people were getting the better of me.

Tried again, still local but less responsibility on £40k.

I can’t EVEN do that.

It’s now 2015 I’ve moved twice and I am just going to have to finally admit I have mental health issues.

My spine is deteriorating, my children are not getting to school on time, my landlord might find out I’m not working and the school might find out I’m not coping.

Depression, anxiety, zero self-esteem and no support network… I’ve got to do this.

The school get involved, leading to a family conference with my family (now in Wales), my ex-husband’s family and my MENTAL HEALTH social worker, with me begging for help.

How does a bold brave person end up crawling so low. I’ll tell you…

By not taking care of the one organ which is bigger than you… your brain!

My landlord did find out I wasn’t working. I was still paying my £1145 a month rent in full but no, he wanted me out.

November 2015; 5 days before my youngest’s 9th birthday my three children and I were evicted, literally on the street. No temporary accommodation available locally, one North London and one in Harlow.

I emptied my home into a van and a garage I had rented. I find different places for all of us to stay.

Only two nights but two scary, lonely long nights.

I get a call. Erith. That’s somewhere I’ve heard of.

Another move but this time it means I’m in the system that offers help. A year later my family are offered a twee little 3 bed council house in the cutest of roads, garden, a downstairs bathroom to accommodate my disability.

I honestly couldn’t have been more grateful and slowly we start to heal.

So here I am in 2018, nearly another decade on from earning £80k with my BMW and two decades from refusing to be a single mum on benefits…

I AM a single Mum, on benefits with a disability to boot.

Would I have been better off with no career?

No, I loved almost every second of it.

Would I have stayed married?

No, I needed support.

Will I actively encourage people to look after their mental health?

EVERY SINGLE DAY!

I’m lucky. I am 43, once again with the world at my feet… it’s a blank canvas… now what is it I want to do?

By Lucy Robinson

The Devastating Plight Of Kent Families Hit By Austerity By Kelly Grehan and Lisa Mulholland

This past week has highlighted how the people of Kent are suffering from further cuts to services.

On Monday it was announced that Kent County Council had decided to press ahead with the £400,000 cuts to breastfeeding support services.

This was despite a staggering 1,294 responses to the consultation (the average last year was 156 per consultation) and an evidence based campaign from ‘Keep Kent Breastfeeding’.

Data from Unicef indicates that 81% of mothers wish to breastfeed their babies at birth, but only 17% babies are still exclusively breastfed at 3 months.

The health benefits of breastmilk are well known.  We are particularly concerned over the impact on the emotional health of mums who want to breastfeed and are not supported to do so, and as such experience a sense of failure, this is at a time when postnatal depression is on the rise.

A 2015 study by Netmums indicated that one quarter of all new mums experience loneliness.

NCT research shows that good breastfeeding support has practical and psychological benefits for mothers; impacting on the wellbeing of their babies.

Breastfeeding support workers had the luxury of having time to spend with mums. I think we all recognise that, with the best will in the world, Health Visitors who will be expected to take on the task and void left as a result of these plans will not have the time to spend with women.

It seems KCC did not comprehend the value of breast peer support workers and thought only of the initial costs.

Maybe, having awarded themselves a 12% pay rise last year maybe it is inevitable KCC Councillors would need to make cuts.

The cuts to breastfeeding support were not the only indication that family needs are not the priority of KCC this week.

Last Friday The Royal College of Psychiatrists revealed Kent have only 3.75 child and adolescent psychiatrists per 100,000 children.

The lowest number in the country.

In London, the tally is around 17.  With a national average of around 8, it is evident that Kent is leap years behind the UK.

And that is no mean feat when you consider many councils and people across the UK as a whole are suffering immensely from austerity.

The toll it takes on parents and families is immeasurable.

I ( Lisa) have written about my personal battle with child mental health services as a Kent parent and was asked to appear on the BBC local news to talk about the effect it has had on me and many other families throughout Kent. You can read my article here https://theavengeruk.com/2017/09/18/my-open-letter-to-the-pm-about-how-austerity-affected-my-childs-mental-health/

It is a sad fact that life is not easy for many Kent children.

The End Child Poverty Coalition estimate more than 93,000 children in Kent are living in poverty.

Shelter estimate 2000 children in Kent are homeless.

An investigation it carried among people living in emergency B&Bs and hostels found every family living in a single room, with 25% having no access to a kitchen and 50% having to share toilet and bathroom facilities.

Imagine growing up in those conditions!! And it begs the question, where is the help for these families?

The suffering and endless misery does not stop there.

Since 2015 the average Tory cut in funding to each primary school has been £54,000, and to each secondary school it has been £205,000.

Teachers and parents are having to fund vital equipment. And now they’ve denied 1m children a free hot school meal. Unless the DUP own you of course; children Northern Ireland is exempt from these cuts

It seems that no service is safe.

Maybe it is unfair to place the blame squarely on KCC.  Tory austerity has hit them hard.

For example:

● The council is expected to make around £75m of savings next year, out of a £900m budget.

● In the past five years the council’s grant from central government has been cut by £185.4m.

● The council says it has made savings to the tune of £417m in the same period, because of the drop in funding and increased demand in services

But yet this remains the sixth richest country in the world!

Yet at every turn our children are failed time and time again. Budgets are cut to shreds and it seems to be children who are on the receiving end. What a sad state of affairs this is.

We will be taking a closer look over the coming week of how austerity has affected services across Kent.

Without awareness we cannot seek to change what is happening.

A Review Of The ‘Inspiring Kent Labour Women Event’- 10th March 2018 By Kelly Grehan

Spurred on by International Women’s Day on Thursday a group of us from Dartford CLP headed down to Canterbury for this event.

Since becoming Kent’s only Labour MP last June, Rosie Duffield has become the pride of the Labour Party movement throughout Kent, with all of us feeling that she is ‘our Rosie’ .

The fact she worked in ‘ordinary, but important’ jobs such as a Teaching Assistant and for charities and juggled this with being a single mother has certainly been inspiring for the rank and file female Labour members.

Ive written before about how in my experience women often play down their skills and experiences and do not realise the value they could add to their communities as councillors https://theavengeruk.com/2018/02/28/a-womans-place-is-on-the-ballot-by-kelly-grehan/ ; so it was interesting to hear Rosie say that not so long ago she felt that standing as an MP was not a realistic option for her and that talking to a fabulous woman called Frances Scott from 50:50 Parliament had made the difference in her outlook.

Frances explained that she launched the 50:50 Parliament campaign which campaigns for gender equality at Westminster with the aim to inspire, encourage and support women in being elected to Westminster and is asking Parliament and all the political parties to work on solutions.

It is very exciting to know that this is exactly what encouraged Rosie.

Women are 51% of the population so it is indefensible that women make up just 32% of our MPs.

Frances spoke about how men can represent women (and vice versa) but are more likely to do a good job when there are women around.

All people use their experiences to understand the world, so it is no surprise that issues which primarily concerning women such as maternity, childcare, the wage gap and domestic abuse have not been priority issues within a male dominated parliament.

Men and women have different experiences – it is not that one is superior to the other – they are just different and all people benefit from those different experiences being valued.

Laura Cashman is Programme Director for Politics and International Relations at Canterbury Christ Church University. She made the point that woman and men vote in the same proportions – yet the false narrative that ‘women are not interested in politics’ persists.

The idea that women cannot be good mothers and good politicians is a myth. Just look at the New Zealand Prime Minister, Jacinda Ardern who is currently pregnant, and closer to home, in France last year; Senator Larissa Walters addressed the chamber whilst breastfeeding her baby.

Yet woman are sidelined in arguments, for example in the Brexit debate only 16% of media appearances to discuss the issue were women!

Given a choice of seminars I opted (after some deliberation it must be said) for Confidence In Campaigning; led by an inspiring woman called Fiona Crawford.

Like many Labour party activists Fiona came to prominence after feeling compelled to campaign on issues she felt strongly about such as racism and the ‘Save Broadstairs High Street’ campaign. This spurred her on to other campaigning.

Other women told of their campaigning experiences, with the message being that campaigning is so varied that there is something everyone can excel at – whether it be door knocking, designing leaflets, making displays and numerous other things.

Hearing women talk with passion about their champion of various causes was so motivating, and a reminder of how much woman have to offer.

What I am increasingly learning is that ‘inspired women’ inspire other women.

As women, we need to get better at telling others what we have achieved and what we value about them.

#AskHerToStand was a campaign championed by 50:50 Parliament.

The power of the movement was bought home to me speaking to one of the members of my group, Sarah Crook, attending her first political event.

Sarah commented “50 : 50 really struck a chord with me. It has seriously made me think about standing. I cannot believe in 2018 it’s still a 2:1 ratio of men to women in Parliament. Frances was so impassioned – she made me want to campaign for the movement”

I ask all women (and men) to join https://5050parliament.co.uk/ and ask friends to think about standing for parliament, council and all other public offices.

Together we can make a difference.

Kelly Grehan is a member of Dartford Labour Party and co founder and writer for The Avenger.