Tag Archives: diagnosis

It took me 32 years to get a diagnosis. Why is autism in girls still overlooked?

Carly is an Autism advocate, filmmaker and speaker. She wasn’t diagnosed with autism until she was 32, after two of her daughters were diagnosed. She found it a battle to get a diagnosis and started to notice a lack of understanding and resources when it came to autism and girls.

In this blog Carly shares her journey and talks about why we need to start recognising and supporting autistic women and girls. 

Growing up feeling different

My earliest memory is being the kid that couldn’t go to preschool without my mum staying. My mum actually got a job at the preschool so I would go! I remember it seeming very noisy and busy. All the kids were playing but I wasn’t. Then when I started school that didn’t change. I remember feeling very different then and things got even harder in secondary school. I was really anxious. I started realising that I never got invited to birthday parties. I couldn’t cope with bright lights and they actually made my quite hyper. My teachers just thought I was naughty.

My parents took me to see a psychologist at 14. He said I was just lazy and his advice to my parents – which is the worst advice you give an autistic person – was she needs everything new, she needs a fresh start. So we moved house and I started a new school but life just took a downward spiral for the worst. I got into all sorts of trouble, bad boyfriends. Obviously I had no understanding of how vulnerable and naive I was, no idea of the consequences of my actions at all. I ended up pregnant at 15 and living in a homeless hostel. I had my daughter who’s wonderful and I worked hard to turn things around, but there are serious consequences to not being diagnosed and not being supported.

carly-jones-blog-3-resized
Carly at the UN, where she spoke about autism and girls

“You can’t be on the autistic spectrum because autistic people can’t act”

I have three daughters and two of them are autistic as well, which is how I found out that I was. My 14-year-old was diagnosed when she was six and my youngest was diagnosed when she was just two. In the process of trying to find out anything I could about autism and girls for them, I realised “oh this explains everything!”

I went to see an NHS psychologist who gave me a tick sheet with things like “Do you prefer parties or museums?” – you know, one of those. I scored quite highly on it but then he asked “What are your hobbies?” and I said “I love acting” and he said “Oh then you can’t be on the autistic spectrum because autistic people can’t act”.

I left it for a while, then I wrote to the lady who discovered Asperger’s. I wanted to film it so that no-one else would have to go through this alone. Because I felt so alone. She invited me to meet her and I finally got my diagnosis – on film! There was a mixture of emotions but overall it was complete elation. I had my answers and I could start rebuilding my life, understanding who I am. I always felt like a second class ‘normal’ person and now I know that I’m a top class autistic, so I’m fine!

Why is autism in girls overlooked?

I was told in 2008 by educational staff that it was impossible that I could have two autistic daughters because autism only happens to boys. Every book I picked up to try to understand and support my daughters all referred to “he” or “my son”. There was nothing for girls. I just thought why?

I think gender stereotypes are a big problem. Not only are there lots of women who are undiagnosed and unsupported, there are lots of men who present themselves in a more feminine way and they’re not diagnosed and supported either because they’re not the stereotypical view of what autism is – they’re not “train spotters” or like “Rain Man”. Also, female pain and female differences aren’t always taken as seriously. It’s always “Oh they’re probably hormonal”. Even my reaction to the sensory overload was seen as “Oh she’s in a bad mood” – and being autistic, I couldn’t explain my discomfort to them.

Then there’s what I call the ‘chameleon effect’ – masking your differences and trying to blend in. We do this just to survive in a scary, unpredictable world. Things are changing but there are still pockets in the UK where this is happening and girls aren’t being believed and supported.

Head and shoulders shot of carly in front of a brick wall

I want to make sure the girls in our country are protected and supported

Globally there needs to be more recognition of autism and girls. In the UK it’s a really exciting time because I’m looking around and seeing so much more awareness. People finally believe we exist – yippee! That’s my first eight years done. Now my next eight years will be about making sure we have equality; making sure we have the same protection and opportunities as everyone else.

Some things that happened in my life were awful but in hindsight I’m grateful now because I know how important it is to make sure that the girls in our country are protected and given proper support. I spent 32 years of my life thinking I must be “stupid”, “crazy” or “unliked”. Being diagnosed gives you an understanding that this is how you see things and this is how other people see things differently to you. It gives you self-awareness. I’ve got a lot more confidence now. The hardest thing is knowing who you are after years of it being eroded away. I’m still discovering myself now but it’s quite exciting. I’m getting there!

Find out more about Carly’s story on her website. You can also buy Carly’s book about autism and girls.

If you have a story you would like to share, get in touch with the stories team.

No one expects to find out they have cerebral palsy at 60

Meet Paula, who contacted our helpline after learning she had cerebral palsy – at the age of 60. Until then, she had never received any kind of support.

In January 2015, soon after my mother died, my sister called me and told me I should see my doctor as there was ‘something I should know.’ I went to my GP and asked him to read me the medical notes from my birth. He told me that I had mild cerebral palsy.

I’m 60 years old, and I had known nothing about it until then.

My mother and I had not been in touch for 23 years, for many reasons. I will never know why she didn’t tell me.

There was more of a stigma around disability at that time, so maybe that was a part of it. Or perhaps she thought that because I didn’t need a wheelchair or anything, it wasn’t worth doing anything about. Sadly, attitudes still need to change.

Blaming myself

Not knowing about my cerebral palsy has made my life a lot more difficult than it really should have been.

My movements are awkward and slow, meaning I need extra time to do things. My speech also causes me difficulties. When I’m tired, it’s really hard for people to understand me – almost impossible if I’m exhausted.

Paula and her baby son
Paula and her son

But all my life I blamed myself for my differences, and thought I was just clumsy and slow. I drove myself into the ground trying to keep up at work, and that took its toll on me emotionally. When shown a job, it takes me longer to learn, and it often resulted in people getting annoyed with me.

I was never offered any extra support when I found things difficult. In one job, my colleagues would go home after they had finished their work, leaving me to finish my part alone. A supervisor once said she ‘felt like shaking me’.

I always tried to remain positive and upbeat, but it had a huge impact on my self-esteem and confidence. If I had known more, I think I would have stood up more for myself. And I could have asked for support with things such as my speech, which would have made a big difference for me.

Scope’s support

I rang Scope within a fortnight of finding out, and they sent Olli, a regional response worker, out to visit me. I thought she would have no time for me, but she came out the very same week. She said she had never met anyone who didn’t know about their condition until my time of life.

Olli has been fantastic, and having her information, advice and support has been excellent. With her guidance, I have sought out speech therapy, which has greatly improved my speech. I have also had physiotherapy and seen a continence nurse, and I have had rails installed in my bathroom.

Paula and her husband
Paula and her husband, who have just celebrated their Ruby wedding anniversary.

Life today

And just having this knowledge about myself has changed my life for the better. I feel much less agitated. I always felt I needed some kind of help, but I never knew what I needed or who to ask. I’m finally making up for lost time. I’ve now got the confidence to try new things; I go to Tai Chi, I swim and I am a bell ringer.

 I feel the things I have had to deal with in life have made me focused, determined and positive. I’m more aware of other people’s problems, and how they are feeling.

Excitingly, I’ve recently become a grandma. This got me thinking about my own experiences and how much things have changed. What happened to me – my disability being brushed under the carpet – I wouldn’t want to happen to any child today.

Our helpline is only possible thanks to donations from supporters.

You can help us be there for disabled people and their families by donating to Scope today. Your gift can support services such as our helpline, offering vital information and guidance to those who need it – whether 6 or 60.

I published a book so others can walk this road with me

Rachel is mum to Sam, who has severe cerebral palsy. She writes a blog, and she’s just published a book called The Skies I’m Under.

She’s doing a Q&A on our community this week – feel free to come and say hello! Here Rachel talks about her experience at the time of diagnosis. 

Memory is a funny thing. I can tell you the name of the boy I fancied aged nine (Andrew Jafferies) and sing you the ‘Milkyway’ advert from start to finish, but I can’t tell you why I just walked into the living room. It seems my brain is very good at identifying important information and promptly forgetting it.

A day I’ll never forget

There are some things though I will never forget. Like the day I was told my son, Sam, had been born with severe brain damage. Three years ago, I set off on a journey of remembering. I sat in the summerhouse in my garden and started writing about my early days of motherhood. I wasn’t just sketching out what had happened but I settled there, and filled in the hues and shades of a time when my life was turned upside down.

Last month, I published my memoir about becoming the mum of a severely disabled son, so now others can walk this road with me. Here’s an extract from The Skies I’m Under. It tells of how my husband, Tim, and I were told the results of an MRI scan that confirmed Sam’s brain damage.

“I’m afraid it isn’t good news.”

‘The doctor in front of us finally stopped, swung open a door, and showed us into a small office. We entered clinging onto our hopes of a miracle, with our dreams intact. The room resembled a large cupboard, absent of a two-seater sofa or box of tissues. With the small room void of natural light, limited space and haphazard layout, the doctor was required to perch on the edge of a desk as she began to talk.

“I’m Doctor Rutherford,” the slight woman explained. She introduced her colleague, whom we had seen earlier that day.

“I’m afraid it isn’t good news. The scan shows severe brain damage.” Her words were spoken lightly, yet the room began to close in. She gently and calmly explained in detail how the scan showed Sam had been very unlucky.

I sat rigidly and gazed across at the scan. I began to see a withered, shrunken brain, with deep darkened rims of space where healthy tissue should have been. She explained Sam’s brain damage was both unusual and extensive. Not only had he suffered damage to the white matter but also the grey matter.

“From the scan we can only assume that numerous insults occurred in the time leading up to Sam’s birth and then again at delivery,” she informed us. Her words became a blur of white noise as my mind drowned out the truth; replaying all the times I may have allowed this catastrophic event to occur.

How had I missed my baby struggling inside me?

How had I carried on singing, stripping wallpaper and going about my daily life, when the fragile being inside me was suffering repeated insults?

What kind of mother was I?

Refocusing on the words being thrown around the room, I brought my mind back to the small office and information I wanted to ignore.

“All parts of his brain are affected. He will live with cerebral palsy… resulting in learning difficulties… as well as physical limitations.” There was nothing to say, so we simply nodded, indicating our readiness to hear more.

“He will have complex needs and it seems the areas affecting temperature regulation and vision are particularly damaged.”

Tim bravely asked questions and I was surprised at his ability to talk with a steady voice. The doctor remained vague. We weren’t told he would never walk, talk or eat, but it was indicated that each of these things was in jeopardy.

Our future plans were erased

It was as though the doctor conjured up a paintbrush dripping with brilliant white emulsion and began covering the wall of our future. What had once displayed vivid colourful strokes of our hopes, dreams and future plans, was being abruptly erased. The blank canvas that remained felt daunting rather than full of potential. Nothing could be assumed, and nothing could be expected.

A bomb had exploded in the middle of our lives splintering our world into thousands of tiny pieces. Like walking wounded, we staggered out of the hospital holding onto each other, dazed and bewildered. The words spoken over us rang in our ears. As reality began to sink in, I was surprised at the magnitude of my shock. I simply hadn’t prepared myself for hearing my little boy had profound brain damage.’

A different outlook

I couldn’t imagine what my life would become and how hard it would be. I struggled picturing a world where my son was disabled and my home full of disability equipment. Today, I appreciate that the most picturesque views are often found down a bumpy road. I couldn’t foresee neither the heartache, the love, nor the smiles.

Win a signed copy! Ts&Cs

Want to win a signed copy of Rachel’s book? To enter, sign up to the community and comment on Rachel’s discussion. Only one entry per person. The prize draw closes on 1 February at 10am. The winner will be chosen at random after this date and notified via email. The book can only be posted to addresses in the UK and no cash equivalent or alternative prize will be offered.

Rachel is doing a Q&A on our online community from 25 to 31 January. You can ask her about her experiences and find out more about her book. 

I wasn’t told I had cerebral palsy till I was 60 – Paula’s story

Guest blog from Paula, who contacted our helpline earlier this year after learning she had cerebral palsy – at the age of 60. Until then, she had never received any kind of support. Here she shares her experience.

In January 2015, soon after my mother died, my sister called me and told me there was something she needed to tell me – that I have mild cerebral palsy, and that my mother had never told me. I am 60 years old, and I had known nothing about it until then.

I went to my GP and asked him to read me the medical notes from my birth. Sure enough, there it was.

My mother and I had not been in touch for 23 years, for many reasons. I will never know why she didn’t tell me.

There was more of a stigma around disability at that time, so maybe that was a part of it. Or perhaps she thought that because I didn’t need a wheelchair or anything, it wasn’t worth doing anything about. Attitudes were very different then.

Paula, touching a tree in a garden
Paula today, photographed by her husband of 40 years, Graham

Blaming myself

Not knowing about my cerebral palsy has made my life a lot more difficult than it really should have been.

My movements are awkward and slow, meaning I need extra time to do things. My speech also causes me difficulties. When I’m tired, it’s really hard for people to understand me – almost impossible if I’m exhausted.

But all my life I blamed myself for my differences, and thought I was just clumsy and slow. I drove myself into the ground trying to keep up at work, and that took its toll on me emotionally. When shown a job, it takes me longer to learn, and it often resulted in people getting annoyed with me.

I was never offered any extra support when I found things difficult. In one job, my colleagues would go home after they had finished their work, leaving me to finish my part alone. A supervisor once said she ‘felt like shaking me’.

I always tried to remain positive and upbeat, but it had a huge impact on my self-esteem  and confidence. If I had known more, I think I would have stood up more for myself. And I could have asked for support with things such as my speech, which would have made a big difference for me.

Paula, with her baby son
Paula with her son

Life today

I rang Scope within a fortnight of finding out, and they sent Olli, a regional response worker, out to visit me. I thought she would have no time for me, but she came out the very same week. She said she had never met anyone who didn’t know about their condition until my time of life.

Olli has been fantastic, and having her information, advice and support has been excellent. I have sought out speech therapy, which has greatly improved my speech. I have also had physiotherapy and seen a continence nurse, and I have had rails installed in my bathroom.

And just having this knowledge about myself has changed my life for the better. I feel much less agitated. I always felt I needed some kind of help, but I never knew what I needed or who to ask.

Paula, as a young woman, smiling for the camera
Paula as a young woman

I feel the things I have had to deal with in life have made me focused, determined and positive. I’m more aware of other people’s problems, and how they are feeling. I just wish I had known sooner about my condition, and I very much hope this wouldn’t happen today.

Attitudes to disability have changed since Paula was young, but did you know that until 1995, it was still legal to discriminate against disabled people? Read more about our work to mark 20 years since the Disability Discrimination Act.

My children and I have a condition that makes words move on the page – #100days100stories

Sinéad and her children have Irlen syndrome, a condition that affects the way the brain processes visual information. It’s a common condition – many people don’t realise they have it.  Sinéad has shared her story as part of our 100 days, 100 stories campaign

My two children and I have a condition that makes words move on the page. When I sit in front of a computer the screen seems to shakSinead, with dark hair and glassese in front of me. My son says the whole world is like a plate of wobbly jelly.

The most common name for this condition is Irlen syndrome but it also goes by Meares-Irlen syndrome, visual stress and scotopic sensitivity. It can exist as a condition by itself or alongside dyslexia.

Common difficulties include problems with reading and writing, over-sensitivity to light, problems differentiating between background and foreground in the environment, and a range of different physical effects caused by dealing with this, such as headaches, nausea, exhaustion.

Our experience of Irlen syndrome

My two children and myself all have Irlen symptoms. They affect us to different extents and in different ways.

My 10-year-old daughter finds the contrast between text and page the most difficult to manage.When she started using a coloured plastic sheet over the pages of her books, she went up three reading levels at school within a term. She also has coloured workbooks provided by the school, which she uses for her schoolwork.

Things that help upload

My eight-year-old son reads very well but likes to use a coloured sheet when there are harsh lighting conditions. He also finds writing on coloured workbooks much more comfortable.

The children respond differently to environmental conditions as well. My son says he has no problems with the class smartboard (a large interactive ‘board’ projected onto the wall of the classroom). However, he howls with pain if the general lighting conditions are too bright.

My daughter doesn’t seem to be too bothered by light, but he needs the background of the board changed so it isn’t white. This is easily done, and most of the children prefer the jollier colour.

I have terrible handwriting; not many people know this. I experience environmental symptoms the most – sensitivity to light, and movement in my vision between the foreground and background.

This means that for me, my tinted Irlen glasses provide the best relief. However, the lenses are a dark turquoise colour and I don’t like to use them too much in the office as my colleagues cannot see my eyes.glasses

On most occasions I actually use a green computer filter over my screen. This reduces headaches and makes it much easier for me to concentrate.

What can be done to help?

There are lots of adaptations that can be made, and many of them are free or readily available. For example:

  • Changing the background colour of the interactive whiteboard in the classroom
  • Using the minimum amount of artificial light in the classroom or workplace
  • Using computers and social media  to communicate instead of handwriting
  • Coloured or tinted exercise books, overlays, reading rulers and tinted wipe-boards

None of these adaptations are that expensive – many could be implemented in every school in the UK tomorrow at no additional cost.

Changing the background of the interactive whiteboard is as simple as changing the colour of a Word document. If budget allowed, they could even have a stack of coloured paper for the children who chose to use it.

I would ask every teacher parent, school governor, MP and councillor reading this article to go into your local school tomorrow and ask them to do at least two of these three things.

It’s likely to improve academic performance – and it could just save the school life of many undiagnosed children sitting and suffering in silence.

Have you experienced any of these symptoms yourself? Are there any other ideas you would recommend? Talk about it on Scope’s online community.

Find out more about 100 days, 100 stories, and read the rest of the stories so far. 

“Without Ian I don’t know what we would have done” – #100days100stories

When Kelly was told that her two-year-old son, Lincoln, had cerebral palsy, she turned straight to the Scope helpline to find out more. That’s how she met Scope Response worker Ian, who was on hand to answer her questions. Kelly has shared her story as part of Scope’s 100 days, 100 stories project

Kelly holding up her toddler Lincoln
Kelly and Lincoln hugging

My husband Adam and I were told that our two-year-old son Lincoln had cerebral palsy in July 2014. Things suddenly made sense as we’d been worried about Lincoln for some time.

Knowing something wasn’t right

Since he was about one I’d been telling health professionals that he wasn’t sitting up or crawling like I thought he should be. I’d worked with children, mainly those about two-years-old, in a nursery for 10 years before I had Lincoln, so I knew what other children his age were like.

It was about this time that I contacted my doctor about it. She told me that it wasn’t anything to worry about and that he might just be a bit of a lazy boy! Apparently lots of boys that age can be a bit slower to develop.

My doctor told me to give him a month or so and then go back if I was still concerned. After the month there were lots more doctors’ appointments and health visitors. People just kept telling me that he was a lazy boy and that I should stop worrying.

Waiting for a diagnosisKelly playing with Lincoln on the floor

It wasn’t until he was two that a pediatrician actually told us that Lincoln had cerebral palsy. It wasn’t as much of a shock as it could have been to be honest.

I’ve got a friend whose son, who must be in his thirties now, has got cerebral palsy too.

I had been talking to my friend on Facetime one night telling her about Lincoln and she said it sounded a lot like what she had experienced when her son was growing up.

When the doctor gave us the diagnosis he said that we didn’t actually seem that shocked! We’d already had some time to think about it and let it sink in, so I suppose we weren’t too surprised in the end.

Information overload

Although we weren’t surprised, we didn’t actually know that much about cerebral palsy back then. Once we got the diagnosis we turned to the internet to answer some of our questions.

As a lot of people probably find, there’s just so much out there and a lot of it is rubbish and confusing. Thankfully our GP suggested we get in touch with Scope, as they could provide us with some information.

Ian gave us hope

I sent an email and Ian from Scope’s Response team got in touch with us. The first time he came and visited made such a difference. He was just brilliant. We just bombarded him with questions!

Ian was great at not overloading us with information, but he told us what we could read and what websites to visit in our own time. He actually told us that he didn’t want to just hand us a load of information, because we couldn’t take it all in at once.

Seeing Ian, who has quite severe cerebral palsy himself, really gave us hope. He drives a car, he gets out and about a lot, he works, and I thought that if he can do it, then Lincoln will be able to do it too.

Ian really was our biggest help. Without him I honestly don’t know what we would have done. Ian knows exactly where we’re coming from because he’s had to deal with it all himself. I think that helps, when you know somebody’s been through it themselves.

Accepting Lincoln’s impairment

Me and my husband have now come to terms with the fact that, yes Lincoln’s got cerebral palsy and yes it’s going to affect him for the rest of his life.

But it doesn’t make him a different child to the one he was before we got the diagnosis. He’s just Lincoln, at the end of the day. That’s just the way he is, that’s just him, that’s part of who he is.

See Ian at work behind the scenes of Scope Response.

If you need support or information, call the Scope helpline on 0808 800 3333.

Get involved in our 100 days, 100 stories campaign and read our stories so far

Undiagnosed Children’s Day 2014

SWAN UK (syndromes without a name) estimate that 6,000 children with undiagnosed genetic conditions are born every year. Today’s Undiagnosed Children’s Day has a mystery theme to highlight the fact that many undiagnosed children are medical mysteries. They’ve also created this fun video for the day:

Last month, Lauren Roberts from SWAN UK wrote a blog for us about the practical reasons why a diagnosis can be so important – Why do you want to label your child? We had a big response online to the blog, with many people agreeing with Lauren that without a diagnosis getting the right support is incredibly hard:

“If you don’t get a diagnosis your children don’t get the help they desperately need or deserve from the medical profession.” – Pam

“My daughter is a SWAN and hardly gets any help what so ever, anything that could actually help her that costs money she’s not considered for using her non diagnosis as a ‘one day she might’.” – Kathleen

“From experience I know this is extremely difficult and no offers were made before diagnosis, only after.” – Andrea

Read more of the responses on Facebook.

SWAN UK bring families together through an online community and family fun days.

Why do you want to label your child?

Guest blog by Lauren Roberts, Coordinator SWAN UK (Syndromes Without a Name).

Young girl in a push chair A controversial new book caught the headlines last week claiming that dyslexia is a meaningless label which holds teachers and parents back from helping children. The Dyslexia Debate claims that testing for dyslexia is merely a waste of time and resources.

While the book is talking specifically about Dyslexia, it raises a more general question that families are often asked – why do you want to label your child? The social model of disability says it is society that disables people, not their impairments. This is very true, but aside from the emotional need for a diagnosis that many parent seek, there are also some very real, practical reasons why diagnosis is important.

1. A diagnosis may offer a prognosis

People are often surprised to learn that around 50 per cent of children currently undergoing genetic testing through the NHS may never get a firm diagnosis. Without a diagnosis families have no sense of what the future might hold. They have no developmental charts to refer to, no idea whether their child will walk or talk, or even what their life expectancy might be. For parents of children with very complex medical needs, the first few months and years can feel like an endless search for answers.

2. A diagnosis opens doors

Boy smilingAlthough support should be based on assessed need, the experience of many families is that without a diagnosis it can be difficult to access support. Without a diagnosis it can be difficult to get people to take your child’s needs seriously – even if they have very obvious difficulties. You have nothing to write in the box on forms that asks for diagnosis and, in a time of budget cuts, a lack of diagnosis can be used as an excuse to deny support.

3. A diagnosis helps predict recurrence

Without a diagnosis it is impossible to test or predict the likelihood of the condition recurring. There is no way to know if future children or grandchildren will be affected – or whether siblings may pass the condition on to their own children.

4. A diagnosis may help direct treatment

Without a diagnosis it can be difficult to know what is the best course of treatment. Some children respond unusually to drugs and have undergone numerous surgical procedures without success.

5. Without a diagnosis you often feel like you don’t fit in

Mum hugging young boyFamilies of children with undiagnosed genetic conditions often feel they don’t belong with other networks or groups that offer support to families of disabled children. They dread having not having an answer for the ‘what’s wrong with them’ question.

SWAN UK (Syndromes without a Name) is an initiative of Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions. On Friday 25 April, we will be leading the UK celebrations of Undiagnosed Children’s Day. We’d love you to support us!

Find out more about our It’s a Mystery Day and how you can get involved.

Scope’s Face 2 Face schemes offer emotional and practical support and operate across the UK. Any parent of a disabled child may use their local scheme, even if your child hasn’t been diagnosed.

Scope Face 2 Face Befrienders Scheme

In a new blog post from “Life With An Autistic Son”, a Dad shares the experience of receiving his son’s diagnosis.

Life with an Autistic Son

Scope-logoI can still vividly remember the feeling, three years ago, when I stepped out of the paediatrician’s room and back into a world that had changed forever. When I stepped inside, there was still the (remote) chance that our son was not autistic, that a diagnosis would not be made and that, given time, everything would work out the way we had planned it.

When the diagnosis came, and we stepped out into our new world, we were unprepared. Of course, I had thought at length about how things might be, how we would respond and how we would feel, as well as what it meant for my son. What I hadn’t counted on is how utterly isolated I would feel.

Perhaps if we had left with an information pack, a reading list or a leaflet I would have at least had something to (literally) cling onto. A starting point…

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