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FAMILIES sidelined by law on over 18s with learning disabilities…The Sunday Times 18.02.18

0 Comments | This entry was posted on Feb 18 2018

To think that as a parent,  you have given much of  your life over to  caring for a profoundly autistic child with no mental capacity, then, when they reach 18, the authorities don’t have to include you in any decision about them is pretty galling.  Sometimes the only way you can be included is to  fight for something called ‘Deputyship’ or go for a Judicial Review – not many can afford that and why should they…..’

Article from The Times below:

‘Parents of children with autism and other learning disabilities want to use a test case to challenge a law that sidelines families when a child turns 18.

Rosa Monckton, whose daughter, Domenica, 23, has Down’s syndrome, said that although the children might technically be young adults, they lack the mental capacity to make key decisions.

Monckton said she had heard from “hundreds” of distraught families who had been ignored as officials made “terrible decisions” for their children.

Under the Mental Capacity Act 2005, parents who want to be the decision maker for a young adult must ask the Court of Protection for “deputyship” — awarded only in very difficult cases.

Families sidelined by law on over-18s with learning disabilities

https://www.thetimes.co.uk/article/families-sidelined-by-law-on-over-18s-with-learning-disabilities-hdht5l2wk

Royal Parks Half Marathon for The Fred – Fred’s mum is running it…https://uk.virginmoneygiving.com/fredfoundation

0 Comments | This entry was posted on Feb 18 2018

https://uk.virginmoneygiving.com/fredfoundation

 

ROCKET ARTISTS PRESENT ‘ART BY (the amazing) JOHNNY EXHIBITION’ April 2nd-29th – please click on link for all info and press release……

0 Comments | This entry was posted on Jan 17 2018

PRESS RELEASE Rocket Artists present Art By Johnny[2]

Johnny has a book of his art coming out 2nd April. Art By Johnny

 

Angela and Henry Normal’s book about Johnny ‘A Normal Family’ comes out 20th March.

 

Henry Normal’s  third BBC Radio 4 show ‘A normal love’ was recorded recently and goes out 13th and 14th feb (Valentine’s Day).

Parents Share Heartbreaking Message To Friends Who Excluded Their Autistic Son From Parties

0 Comments | This entry was posted on Nov 06 2017
PARENTS

‘Not one invite. Have you any idea how hurtful that is?’

06/11/2017 17:25 GMT

mum has shared the expletive-filled message her husband sent to his friends after their child, who has autism, was not invited to any of their kids’ parties.

Christine Stephenson, from Newcastle, explained it broke her heart that her husband Shane had to call out the exclusion of their six-year-old son Reilly.

“Reilly is pretty much nonverbal and is an awesome little boy,” Christine told HuffPost UK.

“Shane was incredibly upset at the thought of Reilly not being part of his circle of friends. This incident was just the straw that broke the camels back.

“We struggle for support, we have no regular childcare and feel very isolated.”

CHRISTINE STEPHENSON
Christine Stephenson’s son Reilly.

Shane’s message to his friends read: “My so called friends who have kids also have kids parties. Not one invite not fucking one.

“Think about that whilst you go and fuck yourselves; have you any idea how hurtful that is?

“Just for the record in future don’t bother, he’s not an after thought he’s my every fucking thought.”

The message hit a chord with people on Twitter – it was retweeted more than 1,600 times and favourited more than 4,500 times.

It also attracted nearly 300 replies, many from other parents of children with autism who could relate to the situation the Stephenson family found themselves in.

Speaking about the overwhelmingly supportive response her tweet has received Christine said:

“Inclusion is a big problem for autistic people. Reilly may not speak but he listens and he understands – as he grows I fear for the affects this may have on his mental health, as it does for so many others.

“Every message I have received has the same words. This happened to my son/daughter/granddaughter/grandson too, my child was the only one not invited.

“I would say to other parents in the same position: yes, it’s upsetting – no one wants to think of their child as the child that’s not invited – but find your own pack. Those who truly understand and run with them.

“Our friends aren’t horrible people, I know they feel our struggles. They are mortified that Shane feels this way.

“There’s some building bridges to be done now that Shane has spoken about how he truly feels and I think only positivity can come from his outburst.

“The simple advice I give is: Just ask.

“Don’t assume we don’t want to go because it’s difficult, our lives are difficult, often fuelled on three hours sleep. We’ve often fought a battle before you’ve stepped into your slippers.

“Ask if Reilly or any other autistic child would like to come even if it’s for half an hour but definitely ask.

“Parents know how their children will be in certain surroundings and there is no one better placed to call it.

“They may decline but I can guarantee it will be declined with grateful thanks.”

Christine started a blog called ‘Life Of Reilly’ with the hope of making people less judgemental, by giving them an insight into what life with a child with autism is like, (“which is sometimes incredibly hard”). She has also been involved in creating a play called ‘The Life of Reilly’, which is about the family dynamics in an autism household.

“One thing is for sure, from reading the messages of support we have received from people around the world, there has never been a greater need for better understanding,” she said.

The Fred Foundation Accounts 2016

0 Comments | This entry was posted on Oct 19 2017

Accounts 31 December 2016

WE ALWAYS CRAVE HONESTY AND TRUTH AT THE FRED…..SPEAKING THE TRUTH IS HARD AND OTHERS OFTEN WANT TO LOOK AWAY, BUT YOU HELP OTHERS WHEN YOU DO IT. THANK YOU SO MUCH FOR WRITING THIS PIECE.

0 Comments | This entry was posted on Oct 18 2017

I Don’t Want To Be An Autism Parent Anymore


The day started far too early. There was no sweet cuddles in bed or a little voice asking for a drink; no I was woken as usual by screaming. I have had day after day, month after month, year after year of being woken by screaming and I don’t want that anymore.

I don’t want to wake up to a smell that would make you want to vomit and bedding that is fit for the bin more than the washing machine, because yet again it is covered in something that ought not to be seen by anyone else. I am so tired of that now.

I don’t want to sit on my couch in the middle of the night looking at my child and wondering what I did to have a child who sees no point in sleeping, who at 8 still can’t say ‘mama’ and who still thinks the world revolves around his needs only.

I love him more than words could ever convey but I don’t want to be an autism mum anymore. 

I want to be a mum who has fun with her child rather than doing therapy with them.

I want to walk my son to school and talk to his friends instead of sending him in a taxi to a place where I am a stranger to them.

I want to be able to talk to my child about the fact it is his birthday soon and discuss what he would like to do to mark that day.

I want to be someone who takes my child to bowling, teaches them to ride a bike or even goes to the movies with them. Instead the only place I ever take him to is hospitals or respite.

I am tired of missing out on everything. I am tired of never having party invites, knowing nothing about his day at school, having to still dress him, having to take adult nappies and wipes with me wherever I go.

I don’t want to be an autism parent anymore.

I am tired of holding my child as he screams in public again.

I am tired of the never ending judgement, the stares and the horrid comments.

I am am tired of carrying around my broken heart as a result of the interventions and therapies having achieved nothing.

I simply can not bear the thought of my child as an adult knowing what society is like.

I am tired of meetings.

I am tired of phone calls from his school.

I am tired of fighting for everything but then being accused as having an attitude or people thinking I act like I am entitled. 

I don’t want my child to have autism anymore. This is not a ‘different way of seeing the world’ that he has, or ‘a wonderful gift’. This is a child about to be 9 years old who can not say ‘mum’ or use a bathroom himself. This is a child almost my height who still can’t put his own clothes on, brush his own teeth or dry himself after a bath. This is a child who can never ever be left alone, who has to have everything the same all the time, who self harms and wanders. This is a child still with the mind of a toddler who will require others to look after him his entire life.

Who would want that for their child?

Who would want that as a parent?

Today I don’t want to be an autism parent any more.

The problem is I have no choice.

So I strip that bed, bath that child, cook him that breakfast as I always do and let him sit on my knee while he rewinds the same ten seconds of video on you tube he did yesterday and the day before that and the day before that.

Nothing changes much in my house, except my feelings. 

Today I am tired. I don’t want to be an autism parent today the same way any other parent may feel about not wanting to be the mum of a toddler who tantrums daily or a baby who has reflux or the partner to someone with Alzheimer’s. We all have days when we are just down about the life we have.

Yet we carry on. We dust ourselves down, search for some positives or listen to some music.

Tomorrow is a new day. It will probably start off with screaming again too., but maybe tomorrow I will be stronger, more hopeful, more upbeat.

Maybe tomorrow I will want to be the autism parent I need to be. 

Maybe tomorrow. 

TRULY THE FORGOTTEN, A SISTER WRITES ……

0 Comments | This entry was posted on Sep 03 2017

The Forgotten End of Autism

I spent last night in my room in peace. I went to bed around 11, watching a TV show and enjoying the silence of my house. My brother wasn’t home for the first time in a while, and we were able to relax for a few hours. The night before, I went to bed at 11, frustrated as I’d just had an argument with my mum. We were both exhausted as, for the fifth time that day, we’d dealt with my 17-year-old brother having a meltdown over – I kid you not – the Teletubbies.
There is no physical way to explain to someone who hasn’t experienced autism what the emotional labour is like on a family. It challenges one beyond what they think they can cope with, because it forces us to take a look at life’s fundamental question: what is the point?
The issue I broach is one that is rarely expressed in mainstream media and politics – that autism is not and never has been one uniform block of distinction. The actuality is this: autistic people are no more alike than neurotypical people; the condition is an intricate web of varying aptitudes, inabilities and struggles. There will never be an ‘accurate’ depiction of autism because it is not possible to instill the qualities of every autistic person into a single caricature, and that is widely acknowledged across the autism community.
Even so, there is a ‘general’ notion of an individual with autism. Lacking social skills, including eye contact and perception of emotion and tone. Sensory overload, instances of stimming. Whether we mean to or not, when we hear the word ‘autism’, we construct an image of what we assume the person mentioned will be like. We do not think of the ignored edge of the autistic spectrum.
The forgotten side of the spectrum falls to the “low-functioning” children; the ones who cannot feed themselves without making a mess, or perhaps not at all. The incontinent teenagers, the barely verbal adults. Those whose ‘mental age’ is much less than their physical. People like my brother, Stephen, who seem to exist only in their immediate family circle.
For us, it is simple yet heartbreaking. Stephen will never be able to live independently. He requires constant supervision, can’t talk beyond basic requests, can’t use the toilet or dress himself; he can’t so much as cross the road by himself. He doesn’t grasp the notions of money and spending, or even of life in general. His autism is so severe that his world revolves around a rigorous routine of school and home. He thinks in numbers and colours and children’s TV shows. In brutal honesty, I don’t believe he knows what day it is. ‘Mainstream’ is a word that hasn’t left our lips in years.
First of all, nobody truly recognises how tough it is merely to care for someone who needs assistance with everything. Stephen is 6 ft. 2 and has to be bathed, washed and nappies changed. Physically, and mentally, it is downright exhausting. His sleep schedule is non-existent and his meltdowns are unpredictable. His self-harming happens unexpectedly and can last for indeterminate amounts of time. These are the children you don’t see in autism awareness adverts; headbutting walls, smacking their heads, nipping and biting and scratching. It is the most draining thing to devote hours upon hours simply trying to prevent someone from hitting themselves, and a task that seems so stupid and meaningless in nature when you know that, come a few hours’ time, it will simply happen again.
Secondly, there is no general understanding of severe autism sought. I mean, who can I tell? Family rarely if ever come to visit him, be it for reasons of ignorance or genuine lack of awareness. There is only so much empathy my employers can show me when they have never met him. I worry that friends won’t comprehend, or that they won’t want to know him. I positively panic that potential boyfriends will be put off by him, or reject the idea that he has to come first in my life. The media show nobody like him; journalists don’t bother to highlight our situation. Politicians have never asked what we might need. We are completely and utterly alone at our side of the spectrum, in the dark and in the cold.
I am 19; I should spend my days fretting about having enough money to go out at the weekend and passing exams to get my degree. My biggest fear about the future should be whether I’m going to achieve my dream job, what countries I will travel to. Instead, I worry about what will become of my brother. He understands nothing of pain and manipulation and danger. My brother is so bearing on the spectrum that he needs round the clock care, and when I am the only one left to do that, how will I cope?
And you know what? I love him so much. I love him more than anything in this world, because if anything he is pure. He doesn’t know anything of sickness and pain; he has no awareness of hatred. All he knows is his little bubble of love and care that we provide for him, and in some ways I envy him. He makes me laugh with his wittiness and smarts, and he has kept me going through some rough times. He is a positive influence on my life, and I am not taking away from what he is or has done for me.
But the reality is this: we are tired, and we are alone. Families on the severe end of the spectrum feel they cannot write into support groups, because often their experiences feel too extreme. It is impossible to ever establish a sense of normality, or to lull ourselves into the illusion that things will get better. Our children and family members are not just struggling socially, but struggling merely to exist, to function. With no consciousness among the general public of how hard it truly is, there is no relief from this feeling. We simply have to get on with it. We must continue to take care and love a person who will never comprehend what we have done for him, how much we have sacrificed for him, and will never thank us for it.
Understand this also: if you are part of a neurotypical family, you take much for granted that we will never experience. Family dinners out don’t exist. Holidays could never happen. Stephen will never attend a school disco, bring friends over for dinner, or bring home a partner. I will never get to ask him, “do you want kids?” There will be no wedding for me to attend. Never will he have the satisfaction of a job, a home, a sense of fulfilment in this world.
This is what makes my heart ache the most: my brother simply doesn’t understand his own existence.
This is why, when asked the loaded and complicated question of, “would you take away Stephen’s autism if you could?”, my answer is yes. He doesn’t understand his actions, or the consequences of them – the hurt and exhaustion, but also the happiness and love, that he brings on our family. He makes no decisions about himself or his future, and has no comprehension of any normal, everyday concepts that we grasp so simply. We all want the best for our children; all Stephen wants is a box of Teletubbies and a can of Diet Coke.
We don’t have the luxury of forgetting about it. You probably don’t see these children often – families find it hard to take them out in public, as it is much too stressful and we are judged immensely. These children don’t attend your children’s schools; they simply pass you in traffic on a bus, so you don’t have to experience their presence. You have the luxury of avoiding “low-functioning” children altogether.  In a 24 hour, 7-week job, we do not.
The reality is that it cannot be taken away. Whatever becomes of us, we will continue caring for Stephen far into the future. All that I ask for in this time is awareness of the hardships autistic families go through in the meagre task of existing, of living at home. As invisible as we may be in everyday life, we are here, sacrificing normality in the name of love. Don’t forget about us.
Katrina xo

Stephen and I with his beloved Teletubbies. lol
Taken from “KATRINA MC Blog – Lipstick and Politics In which I document my views on makeup and why democracy doesn’t exist. Sometimes.”
____________

*The first somewhat mainstream representation of the broader spectrum of autism that I have ever come across is Louis Theroux’s Extreme Love: Autismwhich shows children attempting to navigate their way through a mainstream school, verbal children on the cusp of being integrated into “normal” life, all the way to children who are barely or non-verbal and have serious self-harm issues. For those willing to delve into the world of autism, it’s a good start. It is available to stream on Netflix.

Fred’s Dad’s office is raising money again – they never forget about The Fred and we are so grateful xx

0 Comments | This entry was posted on Jul 05 2017

https://www.justgiving.com/fundraising/turnmillsummerfest

turmill

Thought how useful the reply might be to some of you when a friend/relative says they want to help but they don’t know how to…..

0 Comments | This entry was posted on Jun 01 2017

Dear Graham Norton: ‘My stressed-out sister’s at breaking point – how can we take the pressure off her?’

Graham Norton
27 MAY 2017 • 7:00AM

Dear Graham

I was wondering if you could advise my sister. She is 43 years-old, married with two children, one of whom is autistic (he is nine, his sister eight).

Her husband is unable to work or drive for health reasons, so she does everything in the house and with the children. She works part-time and just about covers the bills. They have no mortgage, having both sold their previous houses, but still it’s a struggle financially.

We help out when we can, but it’s clearly wearing her down. She is talking about paying for someone to take her children out at weekends, as she says she can’t cope with them. But I don’t see how they can afford to do that more than once or twice.

I’m starting to feel concerned for her mental health but I don’t know what more we can do. Do you have any suggestions?

Anon, via email

Dear Anon

Obviously money is an issue for your sister; but it seems to me that the far more pressing problem here is time. She needs a break and, happily, she knows it and is planning to do something about it.

Perhaps it won’t be practical to pay for help every weekend – but just knowing that at some point she can step off the treadmill for a while is bound to improve her outlook on life and make the situation she finds herself in more tolerable.

You don’t specify whether the help you give her involves money or childcare: if it’s the former, that’s very welcome, I am sure; but maybe it would be even better if you occasionally took her children out for the day or had them for a sleepover during the week.

Be the person she can talk to

Although things are very difficult for your sister, they may improve once her daughter becomes more independent. Presumably she has already investigated what help is available from social services with regard to her son.

She needs to figure out a way of coping that she can maintain for the long haul. This is a marathon, not a sprint. After nine years it seems she has hit the wall, and it is time to re-evaluate things.

Be the person she can talk to. Allow her to vent her fury at life. There will be days when she hates her husband and her children, and you need to let her know that is OK.

I imagine that one of the hardest things about your sister’s situation is how alone she sometimes feels. She is single-handedly keeping the show on the road. No one expects you to join her every step of the way; but simply knowing that you have her back – and can offer an extra pair of hands occasionally – may mean the difference between coping and not.

A mother’s howl of anguish: Caring for severely autistic son ‘I found him blood-covered, banging his head against the wall, but all I could do was go back to bed’: Mother of severely autistic son, 26, says there is no help available from the NHS in a crisis

0 Comments | This entry was posted on Jun 01 2017

A mother’s howl of anguish: Caring for severely autistic son

  • For 26 years Jan Lane put her needs aside to care for her severely autistic son
  • She lost a career and two marriages in the process – but now is speaking out
  • Finding out just how little specialist help is available for Luke will make you angry
  • Jan says: ‘In a crisis, no care is provided, it seems, except medication’

The anguished howls that woke me in the early hours of the morning sounded more animal than human, but I knew instinctively that it was my son Luke, lost in a pit of despair.

He is autistic, the result of the encephalitis he contracted as a seven-week-old baby, which left him with invisible brain damage. He also suffers from chronic anxiety which, untreated, can cause debilitating depression.

For the past 26 years, I’ve always slept on the brink of alertness, ears attuned to the slightest sound that might indicate Luke is in distress and about to wreak harm on himself or havoc on our home. Twice in his life he has tried to kill himself, so I live with the perpetual sick fear that a third attempt might prove successful.

For 26 years Jan Lane put her needs aside to care for her severely autistic son, Luke

For 26 years Jan Lane put her needs aside to care for her severely autistic son, Luke

But in the half-light of that morning, ten weeks ago, I stumbled from my bed and took perverse comfort in the fact that the unearthly noise Luke was making indicated that at least he was still alive.

I heard the rhythmic thud of something repeatedly hitting the kitchen floor and, opening the door, I realised it was Luke’s head. Laid out in front of him, with forensic precision, were two kitchen knives, two screw drivers and a sharp blade.

I did not realise until later that morning — when I saw the sofa splattered in blood — that Luke had already been slashing at his arms with the blade. He had also carved an obscenity into his leg, indicating the depths of his self-loathing.

He hadn’t spoken a word for the previous two weeks, and was inflicting physical pain on himself to deflect from the mental anguish that was torturing him.

It is a measure of how dreadful his torment is at times like this that he would rather suffer almost any amount of tangible pain than have to endure the tumult in his mind.

So what did I do when faced with this terrible scene? Did I run to the telephone and dial a well-remembered and trusted number? Did I scramble a team of highly trained professionals to swoop in and rescue my poor boy — and me — from this unbearable situation, so they could give him the urgent specialist psychiatric care, and me the rest, we so desperately need?

Finding out just how little specialist help is available for Luke will make you angry

Finding out just how little specialist help is available for Luke will make you angry

No, I didn’t. I went back to bed. That help is not there — it never has been. I’m on my own with this problem, and totally out of my depth.

There was nothing I could do for my boy. He wouldn’t let me touch or comfort him, and made it clear he wanted to be on his own. All I could do was crawl back under the duvet and pray for him to get better. In time, he calmed down.

Two kind and well-meaning professionals, our GP and a mental health nurse, have seen Luke during the recent weeks of this latest crisis, but I suspect they, too, feel out of their depth. Our doctor prescribed powerful drugs — intended to calm him, lift his mood and make him sleep — but they seem to just render him temporarily oblivious. It does not deal with his pain or the underlying cause.

The truth is our overstretched NHS simply has not got the resources — or, it seems, the expertise — to look after my son. It can take weeks, or months, for an appointment. I have to fight for everything, and I don’t always win. So I write now, in despair.

 The truth is our overstretched NHS simply has not got the resources — or, it seems, the expertise — to look after my son. It can take weeks, or months, for an appointment. I have to fight for everything, and I don’t always win. So I write now, in despair – Jan Lane

Prince Harry has brought mental health to the forefront of our minds by speaking out about the depression he suffered when his mother Diana died. While I do not want to demean the helpfulness of this brave gesture of solidarity with others who suffer the quiet torture of mental illness, what young men like Luke need are not words, but deeds.

This is what our health service — focused on physical well-being — apparently cannot offer us. In a crisis, no care is provided, it seems, except medication.

My life revolves around Luke. I scratch by, barely coping financially or emotionally, as I am his support system. It has cost me my career and two marriages.

Before his birth and subsequent illness, I was the treasurer of a private merchant bank in Bristol, married to my first husband (Luke’s dad), who ran a successful courier company. We had a lovely home we’d built ourselves, set in a third of an acre of Wiltshire countryside.

Luke was conceived during a skiing holiday in Verbier, Switzerland. I intended to go back to work three months after his birth, but of course, I haven’t been able to work a day since.

I adore Luke with a fierce maternal love, but he is hell to live with and is the main reason for the breakdown of my first marriage, and the cause of my second divorce four years ago. Not many people can cope with this intense level of parenting. Now it is just Luke and me, battling against all the odds.

Luke has so many labels he once had business cards printed with all the letters after his name — he has a quirky sense of humour and a love of irony.

My PROUDEST ‘mum moment’ came when he was chosen to carry the Olympic torch in 2012. In 2011, he also went to Parliament to launch an initiative to make banking easier for people with disabilities

My PROUDEST ‘mum moment’ came when he was chosen to carry the Olympic torch in 2012. In 2011, he also went to Parliament to launch an initiative to make banking easier for people with disabilities

Aside from his autism, he has attention deficit hyperactivity disorder (ADHD), which, allied to his anxiety and depression, is an explosive mix. He also has Tourette’s syndrome — uncontrollable outbursts known as tics — and pica disorder, which means, like a dog, he chews and eats inanimate objects like TV remote controls, fabrics, wrappers, wine corks and so on.

I don’t think a day of his life has gone by when he hasn’t vomited — either through anxiety or because he has eaten an indigestible item or something tastes or smells ‘wrong’ to him.

Frustration often makes him violent, too. The walls and doors of our home near Chippenham, Wiltshire, are dented with the imprints of his fists. He lives in a perpetual mess, his bedroom is every mum’s nightmare and he has little short-term memory.

He can be funny, angry, aggressive, misogynistic, politically incorrect and pedantic.

 I don’t think a day of his life has gone by when he hasn’t vomited — either through anxiety or because he has eaten an indigestible item or something tastes or smells ‘wrong’ to him

He also has a sharp insight into his condition, which, in a sense, makes it harder for him to bear. Were his autism more severe, he would be blissfully oblivious to the differences which set him apart from others. As it is, he is painfully aware of them, while unable to change himself to suit other’s expectations of him.

But Luke also has talent, wit, charm and an unerring ear for mimicry and impersonation. At his best, he is a hugely entertaining character. Given the right environment and the support of experts who understand his condition, Luke thrives. Without specialist guidance — adrift in the world — he sinks.

We know this because while he was at mainstream school he started to flounder and was expelled, aged 15, for retaliating against the bullies who had systematically tormented him because he didn’t fit in. After that, he slit his wrists, his first suicide attempt — he thought he had failed at everything and it took this level of despair to finally get him a place at a special school in Wiltshire.

Here, because he was given the expert help and support he needed by the incredible headmaster, Mr Williams, Luke thrived, calling himself ‘the best of the worst’ instead of being ‘the worst of the best’. He became an ambassador for two national charities and proved himself as a leader and an inspiration to others with his conditions.

 Luke has so many labels he once had business cards printed with all the letters after his name — he has a quirky sense of humour and a love of irony

Six years ago, as youth patron for the charity Ambitious about Autism, he completed a five-day trek across the Arctic, mentoring pupils from his former school: this was filmed for the BBC and Luke provided the commentary.

My PROUDEST ‘mum moment’ came when he was chosen to carry the Olympic torch in 2012. In 2011, he also went to Parliament to launch an initiative to make banking easier for people with disabilities.

However, since Luke left school at 18 he has desperately wanted to be independent and support himself, but this has proved impossible without the appropriate understanding.

He has the attention span of a flea, a toddler’s emotions and propensity for tantrums, and the strength and intellect of a man. Left to fend for himself in a world he finds totally alien, how can he survive?

He has had a succession of jobs, but as he has been beset by such paralysing anxiety they have been cut short.

He worked at a supermarket checkout, but suffered panic attacks which caused him to vomit, before being transferred to the warehouse, where his social anxiety and sensory overload became debilitating. Two years ago, Luke took an overdose of his prescription pills. My daughter Abbi, 23, and I found him unconscious. A note beside him thanked us for our ‘futile’ attempts to help him and concluded, heartbreakingly: ‘I am beyond help.’

It is a measure of his desperation that when the paramedics arrived and Luke was resuscitated, he reproached himself for failing in his attempt to end it all.

He wasn’t sectioned then — he should have been, for his own safety — as there was nowhere to take him. The paramedics read a book I have written about Luke while caring for him. I wanted them to understand that he’s not mad or bad, he’s autistic.

'It is a measure of his desperation that when the paramedics arrived and Luke was resuscitated, he reproached himself for failing in his attempt to end it all'

‘It is a measure of his desperation that when the paramedics arrived and Luke was resuscitated, he reproached himself for failing in his attempt to end it all’

And so we have survived, until ten weeks ago, when this latest breakdown happened.

There was no obvious cause for it: Luke had been working on a self-employed basis with a local builder and was loving the job. He is adept at carpentry — a skill he has largely taught himself — and seemed to be coping so well.

The day before, we’d had a lovely family party to celebrate the birthdays of my dad and one of my three sisters.

Then it was as if a switch flipped in his head. The awfulness began. He could not leave his bedroom; nor could he sleep unless dosed to oblivion on his prescription pills.

I spoke to our GP, who, although kind and supportive, is out of his depth with Luke’s conditions. He prescribed antidepressants.

We soldiered on, Luke and I, until the night I came downstairs to find him howling like an animal, in such palpable mental pain that no parent can bear to witness.

The next working day, I consulted his GP and requested an urgent crisis referral to a psychiatrist. We waited three weeks for this appointment. It makes me boil with rage that there is no emergency care available for Luke.

The mental health nurse we saw was superbly caring, but has no experience of autism, so we again found ourselves in limbo.

She said she would recommend that we should be referred to a specialist unit in Bath, with a psychiatrist equipped to deal with Luke’s needs, but first we must fulfil several criteria. What these are I have yet to find out.

 Then it was as if a switch flipped in his head. The awfulness began. He could not leave his bedroom; nor could he sleep unless dosed to oblivion on his prescription pills

The nurse has told us that we will have to ‘fight’ to get Luke this help. ‘Who are we fighting?’ I asked.

My whole life is a fight, I am exhausted with fighting. I find myself preparing to battle an unknown adversary as, once again, I pursue a relentless quest to get my son the help he needs. Broken promises for better help litter Luke’s life.

I am so angry there is such scant and inadequate support for those, like my beloved boy, who try so hard to embrace their difficulties and yet always live life close to the edge.

If Luke had lost his legs when he was so ill as a baby, we would have had immediate and lifelong care. But as his conditions are invisible, we are isolated. Consequently, Luke feels ashamed of himself.

Often, I ask myself how he’d cope without me to manage him, and the answer scares me, because I think he would either be homeless, dead or in prison.

A friend of Luke’s, a young woman with similar difficulties to him, took her own life two months ago and, in the midst of our shocked grief I begged Luke: ‘Please, please tell me you’d never do that.’

The answer he gave chilled me. He said: ‘I can’t promise you I won’t.’ It was the most harrowing thing a child could say to a parent. It utterly broke my heart. How bad does it have to be before help is forthcoming for my Luke and all the other Lukes out there?

It took eight exhausting weeks before our GP finally received the written recommendation from the mental health team that Luke requires an ‘urgent’ referral to the specialist unit in Bath.

Our GP agreed to try and secure the funding for us. When I asked how long this will take he replied: ‘It’s a waiting game.’

You may consider me cynical, but I believe those who run our inadequate and over-stretched mental health services take the view that if they procrastinate long enough, the problem could just be solved for them. It might simply be too late.

LIFE at the Edge And Beyond by Jan Lane (formerly Greenman) was published in 2010 by Jessica Kingsley

Read more: http://www.dailymail.co.uk/femail/article-4559928/A-mother-s-howl-anguish-Caring-severely-autistic.html#ixzz4ijfx0o4p
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