Tag Archives: International Women’s Day

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.

It took me 30 years to make myself heard – World Voice Day

For World Voice Day we’re reposting this guest blog by Mandy, from Hereford. For the first 30 years of Mandy’s life, staff caring for her thought she had no awareness of the outside world. When someone finally realised how much she understood, they helped her get a communication device and Mandy was finally able make her voice heard. 

I was born in Warwickshire in 1965. I have cerebral palsy and use a motorised wheelchair, as well as a communication device which I operate with the back of my hand.

I did not get this device until I was 30 years old. Until then, I had no way of communicating except with my eyes and facial expressions.

Mandy at home, with photos of friends and family on the wall behind her
Mandy at home, with photos of friends and family on the wall behind her

Decisions made for me

I went to boarding school and then to a residential college in Devon. This would not have been my first choice, but the decision was made by the teachers from the school. I would much rather have lived closer to my family, but I was not given this option.

Then I moved into a residential home in Essex, 150 miles from home. It was a big home with 30 people in it, and only five support workers.

I used to get very angry and frustrated, because no one ever asked me what I wanted.

The staff and other professionals did not realise how much I understood, so they did not spend any time with me and I was often not allowed to make my own decisions.

It left me wondering – why? I could see other people making their own decisions. Yet I could not, just because people didn’t take the time to get to know me and understand my needs and wishes.

Finally getting a voice

In the late 1980s I moved to Hereford to live in a shared house run by Scope. I had my own room, but shared the house with a number of other people whom I had not chosen to live with.

A support worker noticed how much I understood, and helped me get a communication device. I mastered its use quite quickly, and could communicate properly for what felt like the first time.

This is where I began to feel a turning point in my life. Imagine what it was like – having a voice after all those years.

I contacted social workers, and with the help of my family and key worker, I started to make my case for living in my own home.

I had to work very hard at making people realise that it would be possible – that I would be able to cope with a more independent lifestyle where I could be in charge of my own life.

Mandy in her garden in Hereford
Mandy in her garden in Hereford

My own home

I got involved with Hereford Services for Independent Living (SIL). With their help and that of my social worker, Maggie, I claimed the allowances I needed to help pay for rent and 24-hour care.

I was very fortunate to get a fully accessible bungalow, and in August 2001, I moved into my own home. Now I really began to feel my confidence grow, and I gained more strength to make my own decisions and speak out. I built up a team of personal assistants by advertising, recruiting and interviewing. SIL supports me to arrange my finances as an employer and helps me sort out relief cover.

My support workers work a 24-hour shift, sleeping in my spare room overnight. This means I can organise my day however I choose without having to work around shift changeovers.

I recently completed a college course, and have also taken a creative writing class and written poetry. I have an active social life and often visit friends.

At this stage of my life, I feel more confident, decisive and stronger than I ever have before.

My dream is to be accepted at school – #100days100stories

Guest post from Chloe, a secondary school student who has mild cerebral palsy which affects the left side of her body. She has shared her story as part of our 100 days, 100 stories campaign

When you are at school it can be hard to know what to say to people. People react to my medical list – which includes mild cerebral palsy – very differently, but this is what I want them all to know.

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Chloe’s splint that helps her walk

The worst thing about having a disability is that people see it before they see you – before they get the chance to know you. I haven’t even opened my mouth yet and I know they have preconceived ideas about me. But that’s okay. I guess if you have something different from others then it is bound to happen. I mean, the stares, they are normal. It’s not every day you see a splint. That’s part of human nature, I can live with that.

It’s the glares of disbelief  that are upsetting. What you see is a tiny part of me. A tiny part of what makes me and my personality but also a tiny part of my medical list. Pain. Pain is invisible to the outside world, but perfectly visible to me on a daily basis.  I’m a part-time wheelchair user. A reluctant part-time wheelchair user at that. I may joke and say “Oh, it’s because I’m lazy” but that’s probably because it’s easier. It’s easier than saying you are in chronic pain, no one wants to hear that, people just want to know things are getting better.

Can I just say, I hate using my chair. It’s the last resort. For me it traps me and can leave me out of control, shows I have given up and can’t go on. If I am in my chair it doesn’t mean that I can no longer walk. It means the pain has become too much to manage – like someone screaming in your ears. Yet I’m still expected to concentrate in lessons and work. It means that fatigue is swallowing me up and not letting go.

Throughout high school my dream was to be accepted because I didn’t see the point in changing for anyone. I believe I am very close to it and for that I am eternally grateful. However another one of my dreams has been to dance in the school show – something I am yet to fulfill. You see, I used to dance, before the diagnosis list got out of hand. In my earlier years I was shy and reserved, something that doesn’t really fit my personality anymore. But now the barriers include my pain, fatigue and reduced mobility. I guess it’s something else I need to come to terms with.

I am constantly reminded about how positive and smiley I am. I’d agree, I am. Although a smile can hide anything you want. It can also make things easier to deal with. Being happy is a lot more fun in my opinion, it also makes others believe that things are all good.  I believe 100 percent that things could be worse. For me everything is normal. Normal is whatever you are used to. I also know it’s possible to live in pain and not just survive. It is possible to create the most amazing memories and achieve the highest possible.

Read more posts from Chloe on her blog.

Find out more about our campaign and read our 100 stories so far.

“Being a small mum in a wheelchair has its benefits!” #100days100stories

Disabled mum Marie started blogging for Scope a year ago when her son Mark was just a few months old. Here, as part of our 100 days, 100 stories campaign, Marie explains the rare prejudices her family faces, and the unexpected joys of being a mum in a wheelchair.

Marie and Mark inside a play tent
Marie and Mark in Mark’s play tent.

Mark is 14 months old and is developing wonderfully in every way. Everything was absolutely fine at his one year check and the health workers told us ‘whatever you are doing, just keep doing it!’ Mark is getting extremely heavy, strong and big and as such I am now unable to move him myself. This can be quite frustrating, especially when we are out in public. For instance, if Mark needs picking up out of his buggy, I simply cannot do this and either my husband or PA (personal assistant) has to do this.

I often see people looking and although they don’t say anything I get the feeling they are sometimes thinking ‘why did they have a baby when she can’t do anything for him?’ But perceptions can be deceptive! Okay, so I can’t lift Mark now but we always knew this time would come – it was inevitable and something I have touched on in previous blogs. I can still do so much with him – I can feed him, bath him, play with him, talk and sing to him. Pretty soon he won’t need lifting anyway and will learn to walk beside my wheelchair. Now is just the tricky period between him being too heavy to lift and being fully mobile himself.

I try not to focus on not being able to lift Mark because that is what my PA is employed for and I prefer to focus on the positive things I can do. One thing that really frustrates me is being out in (for instance) a café and seeing parents glued to their mobile phones, totally ignoring their offspring. We never do this and in fact have so much time for Mark. I’m able to sit with him while my PA -or hubby! – go up and order the cups of tea at the counter at the café. I’m able to play with Mark whilst my PA is doing the housework. How many parents can say that? There are benefits to being a mum in a wheelchair!

Marie and Mark playing on the floor
Play time!

Being a small mum in a wheelchair has its pros and cons. When Mark sits next to me he is now actually taller than me, but being a small mummy means I can hide in his play tent with him! It does of course feel a bit awkward with Mark being taller than me but he knows who mummy is and always responds to me. It can be frustrating that I can’t cradle him anymore but we find other ways to cuddle. When he is teething or poorly he lays on my legs on the sofa and we snuggle together nicely. I rub his face and he grips onto my hand, it’s adorable!

My disability has taught me some important life skills – patience and how to make effective use of time! I will always find ways to do things with my boy and time is something he will always have from me. My disability has slowed life down for me physically, but this is perfect for allowing me to give Mark all the time in the world.

Find out more about our 100 days, 100 stories campaign and how you can get involved.

I was 21, a new mum, and terrified about the future: #100days100stories

We first shared Dionne’s story and film in August 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories project. 

Dionne was in her first year at university in London when she became pregnant with Jayden, now aged seven. He has cerebral palsy, epilepsy and global development delays and isn’t able to walk, talk or sit up.

“I had no problems during the pregnancy, the problems started during labour,” Dionne says. “Jayden stopped breathing and had to be resuscitated at birth. He had seizures when he was just a day old and ended up in the special care unit. Doctors had no idea what was wrong with him.”

“I just had to get on with it”

Dionne had planned to go back to university to finish her degree, but Jayden’s care needs and many hospital appointments ma de that impossible.

She also faced a huge struggle getting any support for Jayden. He was born in one London borough but the family lived in a different one, so neither council wanted to take responsibility – and in any case, services were overstretched. Dionne and Jayden were living alone in a mother and baby unit, with no outside support.

“For the first three years of Jayden’s life we had nothing. No equipment at home, no physiotherapy other than a sheet of paper with instructions, and no real support. Everyone was talking but most people were not doing. I had so much hope in care services but time after time I was let down.

“I was 21, terrified about the future and extremely depressed. There were days when Jayden cried endlessly and didn’t sleep at all. We were both exhausted. I was always on standby for something to go wrong with my son and I hated feeling helpless. I was very critical of myself, and so were the people around me.”

“I go back time and time again”

Dionne originally contacted the Scope Helpline for advice about physiotherapy. She was put in touch with Vasu, a Scope regional response worker, who visited her at home to discuss the kind of support she needed.

Since then, they have worked together to tackle a huge range of issues relating to Jayden’s care, health and education. Vasu wrote to social services pushing them to take notice of Dionne’s case, and this led to Jayden finally being offered a physiotherapist.

Dionne says: “Vasu has sent me so much information about sources of funding and the latest treatments for cerebral palsy. He emails me application forms and sends them in the post as well just to make sure I receive them! He rings me unprompted to give me advice and see how I am. He’s even offered to send job opportunities my way.”

RS3249_DSC_0014Vasu also introduced Dionne to a solicitor to pursue a successful negligence
case against the hospital where Jayden was born, which will be a huge help in providing for his needs in the future.

“Out of all the organisations I’ve been to, Scope’s the only one that’s stuck,” Dionne says. “It’s an organisation I go to time and time again because things actually get done.

“Jayden is so aware and so intelligent. No matter what he goes through, even a seizure, he still has a smile for me. He just needs decent support so he can gain the independence he craves. I want Jayden to enjoy being a child, without restrictions, and I want to enjoy being a mum.”

Today is Time to Talk Day, which asks everyone to take five minutes to talk about mental health.

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