Debunking myths surrounding Autism

Our understanding of Autism has changed considerably over the course of its history, but often new information is not circulated well enough. This is why we need Autism awareness/acceptance month. A lack of wide-reaching science communication, paired with the limited representation of autistic individuals in the media, and society, leads to frequent misunderstandings regarding what it means to be autistic.

For example, some individuals believe there is a link between the MMR vaccine and autism; there isn’t. This myth came about because of a paper which suggested a link but was retracted from the journal for falsifying data, removing data, ethical violations and not reporting conflicts of interest (financial incentives for finding a link). The results have never been duplicated, for example, a meta-analysis of MMR vaccine and autism studies with data equating to 1.2 million children was conducted and found no relationship between the two variables (Taylor et al. 2014). If you want more debunking information have a look at the vaccine knowledge project undertaken by Oxford University.

Another myth surrounding autism is that autistic individuals do not have empathy. Empathy is in fact different across autistic people, much like it is across allistic (non-autistic) people, with some having lower levels, some having hyper-empathy and others having the average amount.

Damian Milton has suggested the “double empathy theory” within his work arguing that people who experience the world differently may not have a mutual understanding of what empathy is and what it looks like (Milton et al. 2019). Double empathy theory suggests that maybe it’s a miscommunication between neurotypes, with autistic people understanding each other’s empathy, and neurotypicals understanding each other’s empathy, but a lack of understanding of difference across these two groups, rather than a complete lack of empathy in the first place. In addition, another paper argues there are two types of empathy, with affective empathy, the ability to feel and share an emotional experience, to feel distress and compassion for others, not being any different between autistics and those who are neurotypical (Rogers et al. 2006).

Autism research participants were historically white, straight, cisgender boys and men. This has led to the development of male-biased diagnostic criteria and diagnostic tools. Because of this, professionals are more likely to consider autism as a diagnosis for individuals which meet these characteristics. Media representations of autistic characters have often portrayed a reduced idea of “what autism looks like” which reinforces this bias, for example: Sheldon Cooper in the TV programme The Big Bang Theory, Raymond Babbitt in Rain Man, and Christopher in The Curious Incident of the Dog in the Night-time. There is very little research on intersectionality within autism.

Autism Acceptance Month (April) is a fantastic opportunity to raise awareness and acceptance of autism. I will be doing just that by partnering with Osprey Charging, one of the UK’s leading networks of rapid electric vehicle (EV) charging points. Osprey invited be to create a piece of unique artwork that celebrates neurodiversity so that they could include it on a selection of their chargers across the UK.

I created ‘The Acceptance Journey’. The image represents the steps we are taking to reach autism acceptance and awareness. The books represent learning with key messages and themes written on their spines. I wanted the piece to be colourful and positive as we work together as a community to reduce stigma, embrace neurodiversity and increase understanding.

‘The Acceptance Journey’ by artist Rebecca Ellis that will appear on Osprey’s EV chargers across the UK to celebrate Autism Acceptance Week

About the author: Rebecca Ellis (31) is a researcher, artist, science communicator, and advocate for the neurodivergent community

Osprey Charging reveals new EV charger artwork that celebrates Autism Acceptance Week

To celebrate Autism Acceptance Week (Monday 27th March to Sunday 2nd April) Osprey Charging, one of the UK’s leading networks of rapid electric vehicle (EV) charging points, today announces that it will be displaying eye-catching, unique artwork created by autistic artist Rebecca Ellis, across its EV chargers.

Rebecca (31) is a researcher, artist, science communicator, and advocate for the neurodivergent community. Osprey has awarded her £1000 for her artwork The Acceptance Journey which is being printed into high quality wraps and exhibited on 21 of its chargers at the following rapid charging locations:

  • Purley Cross Retail Park, Croydon
  • Pearl and Trawl, Wadebridge
  • Rock Rose, Dover
  • Skymaster, Warrington
  • Thatcher’s Needle, Diss
  • Squirrel, Ludlow
  • Stourvale, Christchurch
  • Burger King St Oswalds, Gloucester
  • Willows, Blackburn
  • Allison Street Retail Park, Ayr

Osprey’s chargers have previously hosted artwork in celebration of Pride (July), Black History Month (October), UK Disability History Month (November) and International Day of People with Disabilities (December). It is the only UK charge point network using its charger real estate to display artwork that draws attention to and celebrates these important themes. 

Ian Johnston, CEO of Osprey Charging said “At Osprey we are building an EV charging network that is open to all, and it’s therefore critical for us to show our support for communities who are often underrepresented. By converting our EV chargers into galleries for artwork we are honouring themes that have been suggested by our staff and customers, whilst bringing attention to some important causes and organisations. I want to thank Rebecca for supporting us with this campaign. Her artwork will inspire drivers and others at our charging locations to consider and make choices that respect people with autism as well as all disabilities.”

Rebecca Ellis said “I’m hugely flattered that Osprey has chosen to display my artwork on their chargers. The Acceptance Journey represents the steps we are taking to reach autism acceptance and awareness. The books represent learning with key messages and themes written on their spines. I wanted the piece to be colourful and positive as we work together as a community to reduce stigma, embrace neurodiversity and increase understanding. Thanks to Osprey for giving me a platform to display my art whilst creating such a positive message. The charger artwork project shows allyship in supporting the autistic, neurodivergent and wider disabled communities with these fantastic campaigns.” 

Five years old –  a happy, healthy neurodivergent child

The fifth anniversary of the Autistic Girls Network group on the 17th December has given me cause to reflect upon my own child and their experience of being neurodivergent.

At the age of 5, they had been at school for 3 weeks.

They were extremely excited to be going to school – to follow their big sibling, and all that they understood went with it.

Underneath they were extremely anxious.

But we as parents, and they themselves, didn’t realise that school for an undiagnosed but healthy and happy small neurodivergent individual can be where differences start to appear, labels start to emerge, and real issues can become embedded.

There were no ‘concerns’. But what if we replaced the word Concern with ‘Wonder’. I wonder if there is something different going on for this child alongside their peers? I wonder if they are experiencing things in a different way? I wonder if they might be neurodivergent?

Our Autumn-born little girl was gorgeously wonderfully individual right from birth. She slept through from early on, but once that routine was broken by illness, never slept well again. She hated travelling backwards in the car, but with a safe transitional object was really happy to travel to other places. She processed fevers really badly. She smiled early and often. She fully engaged with people she loved. She was unique in her approaches to play and language. She was totally different to her older sibling.

She was peaceful and brilliantly ‘behaved’, never having the tantrums that our eldest displayed from toddlerhood. She was well-organised, but incredibly messy, knowing at an instant where everything was – and it was usually packed in a small bag with a plethora of other seemingly unrelated items – a horse, a shoe, a lip balm, two lego bricks, a tissue and a tiara.

She was a wonderful physical risk taker, but never a rule breaker – climbing trees and being covered in mud. Often dressed as a princess. She danced with abandon. She sang. She watched her favourite episode of her favourite programme over and over again. She made up a whole new language aged 4 and taught it to us.

She played imaginatively, and played self-sufficiently. Her toys had the most creative names. She was hugely empathetic and noticed friends’ moods and feelings immediately and felt them strongly.  

She always ate very selectively and repetitively, but well. Always plain and always beige, but from all the food groups.

I worked part-time as a parent, and starting at the different nurseries was a big barrier. When settled things went well – that happened at three different settings.

So, sending her to school, where she wanted to go, was a wrench, but a joy to see her so excited.

The first few days were incredibly traumatic. She had friends from ‘real life’ in her class – both boys – and would play with them, but others were a struggle. Playtime with the other classes was extremely difficult. At the end of the first week, she said that as she had now been to school, she wanted to ‘quit and get a job’.

The reception teacher, who was lovely, said she was quiet and shy but ever so clever. And as she was ‘practically perfect in every way’ she was given latitude to participate or not in the Reception-ey activities.

In the nativity, she got a lead role, but was in total meltdown by the end, and I had to take her home.

So there were many, many signs. But with intuitive adaptation by the class teacher, she eventually settled. Supported to find her own way, and with the lighter touch of the Early Years Curriculum, she found her own way once she knew how to navigate the people and spaces and places, and knew she would be safe.

Schools are required to track academic and even social attainment from an incredibly young age, but these ‘tests’ do not flag interaction and social communication differences. I can see how she was ‘missed’ at age 5. And there doesn’t seem to be any joined-up record keeping – outside of school there was one solitary Health Visitor visit at approximately age one. So, a child who struggled with new unknown, unfamiliar environments, with big eating differences, who didn’t sleep, who experienced big difficulties with transitions, who played very differently, who felt feelings very strongly and profoundly, who spoke only once she had mastered the entire language and then used sentences and vocabulary that far exceeded her chronological age, who preferred the contact of adults and older kids over her peers, was not noted anywhere. These are key indicators that a child may be autistic and are ‘Keeping it all Inside’.

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At the end of reception, the classes were mixed (it was a big school) and our child was removed from her friends as she was ’over dependent on them’. Her reaction was intense and powerful. A school ‘accepter’ became a school ‘refuser’ – her safety net had gone. Year 1 was only successful because she again, by chance had a brilliant, wonderful, intuitive class teacher who allowed her to come in 30 minutes before the other children, and have ‘important jobs’ to get her settled.

Some topics covered in the curriculum had profound impacts – The Great Fire of London created a prolonged and pathological fear which lasted for years.

We were remarkably lucky with Primary School by accident, and by our kid having exceptional individual teachers. And because the Primary phase has far more latitude to adapt than Secondary. There were difficulties all the way through though. School avoidance, stomach pains, headaches, meltdowns (as we now know them to be), adaptations made because our child was clearly hurting rather than hurting others. She never made any waves on any ‘radars’. She was noted as gifted and talented. She was nurtured.

And her older brother, a strong-willed, big, loud boy, was ‘pinged’ a few times as having additional needs. But never our peaceful, perhaps too compliant, daughter.

Years 5 and 6 were a huge struggle. Bullying by other girls led to the start of food avoidance. The school intervened and acted lovingly and accordingly, but the damage was already embedded.

And the transition to secondary school was a disaster. Fundamental. Catastrophic. Because there were no notes, not being on any ‘registers’, no observations of her differences, and we were blamed. She was blamed. For being a victim, for not having resilience, for something going on at home. For being shy. For being anxious. For not trying hard enough. For not pushing through. For not speaking out.  They had never had this problem with a girl before. And so, it went on. Perhaps ‘reasons’ others have heard. And her eventual formal diagnoses of Autism, ADHD with the co-occurring but exceptionally dangerous, OCD, PTSD, GAD, potential ARFID and a ‘demand avoid profile’ were all laid bare.

It could have been so different.

What if we changed ‘monitoring’ of children to look for neurodivergence? What if we had and she had been made aware that there were differences, that she was not damaged, or failing, or wrong, but was instead simply a brilliant wonderful neurodivergent youngster – that the differences were just that? That we didn’t require a child to ‘break’ before help could be sought. Perhaps most importantly, that ‘autism’ is not a ‘label, and not a dirty word.

If someone had told us that she was possibly autistic – as they did when she was hospitalised aged 12 – I would have been shocked. As I was. It was not something that I had ever considered, because I ‘knew’ what autism looked like, and it simply wasn’t a girl. But that light bulb moment meant that I could find autistic folk to help guide our steps forward. And she could see that being autistic was who she was. And it wasn’t a bad thing.

If someone had wondered out loud if she may also have ADHD, I could have explored what that meant, and might have recognised it in myself sooner and been able to say ‘Guess what, I think I am too’.

We simply do not have systems – educational or health – that recognise healthy, happy neurodivergent youngsters and help create pathways to ensure that they stay that way. We do not join the dots and notice how vital this self-knowledge is. The systems fragment the ‘parts’ of neurodivergence, and force crises before support is in place. They put parents into conflict with ‘agencies’ when they are potentially dealing with an actively suicidal child. It is all seemingly about money, and not a child in a crisis caused by systems.

Part of this is educational policy – behaviour policies, forced curriculum, the decimation of pastoral support funding, the super size of schools, the removal of easy access to Educational Psychologists. Part of this is CAMHS and mental health funding – a youngster has to be utterly broken and reacting dangerously before they are even able to access waiting lists which are years long.

And part of this seems to be an attitude that difference is bad. Our kids feel this profoundly, that they are failing to be the ‘same’ as neurotypical kids in a neurotypical-designed world. In fact, ‘interventions’ and support are designed to be accessed by neurotypical children, and in many cases prevent those who are neurodivergent from receiving help that is appropriate.

So as my child starts to thrive again, in their late teens, I reflect back on what we could have known at aged 5.

We could have acknowledged that our (still) brilliant, wonderful, loving, kind, caring, smart, intelligent kid was neurodivergent, and helped them see their strengths and themself. We could have advocated with knowledge of what is harmful, and what might be helpful. We could have helped them navigate the rocky road of puberty and friendship from a place of self-knowledge and safety. We would have chosen a different secondary school for sure (2000 kids is not an ideal space for a child with hyperacusis and AuDHD)

Autistic Girls Network has been a safe haven for me. A place to ask for help and advice from others, especially the autistic members. But more importantly, it is a group challenging the very practices and understandings that hamper and hinder autistic folk.

By a longterm member of the Autistic Girls Network Group which you can find here.  If you would like to donate to AGN to help support us in supporting young autistic people you can do so here via Just Giving.

Autism in Black girls

I always thought I was different growing up, but I thought it was because there was something wrong with me. There was always this code, this system, this way of being that everybody else had but eluded me. During my schooling I excelled at analytical tasks that required me to think about abstract ideas and concepts but struggled with easier tasks that required following specific sets of instructions. My teachers would always say I had potential but did not apply myself enough, I did not listen and I wasted time daydreaming. I internalized these opinions of myself and began to hate how lazy, disorganised and clumsy I was. 25 years later and at 31 I find out I am autistic and have ADHD, I’m also probably dyspraxic.

So the question is how did I get missed? What was it about me that meant that every professional I ever met told me it was me that was the problem and I had to change in order to achieve?  My experiences were symptomatic of my own personal failures and not the unique way I experience the world we all inhabit.

The truth is Black girls’ needs are not considered, in general.  We are the last group whose needs are considered across a plethora of areas, maternal health, education, employment and we are the forgotten majority when it comes to matters of neurodivergence.

Any difficulties that surface are seen as a problem with the person, the upbringing, the culture. Black girls are adultfied and thus if they struggle in any way this is something that they have chosen to do and they must fix it themselves.

Yet we continue to be the unpaid laborers who continuously push the above social agendas, we are changemakers for everyone else but ourselves. That is why Black autistic girls/women are an afterthought in the conversation, we are only required when a “diverse” opinion is needed, when the panel is too white, the researchers are too white and the topics for discussion do nothing to enhance our Black lives.

Growing up that’s how I felt, I was different and I needed to be the one to fix it, so I tried my best to learn. I would make friends with the most popular girls and always have a best friend who was more socially competent than me to rely on. This strategy worked so well that for a time everything was great, I always had a group of faithful friends who would look after me, remind me about homework assignments, allow me to copy their work when I was suffering from cognitive fatigue, and plan all our social events so all I had to do was turn up.

What I gave in return was a rare commodity: a loyal friend who could keep secrets, always tell you the truth, and stand up for anybody going through injustice. I was also a very good listener and often would counsel my friends and elders on matters that I could intellectually understand but not emotionally relate to. This is not because I lack emotion: on the contrary I feel things deeply, sometimes too deeply.

You may now be wondering how it all came crashing down, despite my multitude of strategies. Well, there is only so long that you can play a character before you burn out, before you look at yourself in the mirror, ask yourself who you are and do not have an answer. I could be whoever you want me to be, whoever I have to be to survive, to get by, to fly under the net of judgment. At 30 I no longer wanted to play the caricature of normal, whatever that is? I began compiling a document of my experiences, began analyzing my behaviors and then I was somewhat able to accept that I do perceive the world differently and that’s not my fault.

I am how I am and through learning more about myself I become more comfortable with it. This doesn’t mean that I do not struggle at time. I have a lot of lows but I also have a lot of highs, I have a lot of regrets about not being identified earlier, maybe my life would’ve been different and maybe it would still be the same. Either way I am autistic and I am no longer ashamed to admit it.

Now the caveat to this story is despite being a Speech and Language Therapist who has worked with many autistic children over the years and having my own unique lived experience,  medical professionals I have come across have told me that I can not be autistic because I have multiple degrees, run a business, have a big social circle. I am successful by the arbitrary measures that our society imposes on us but to achieve it all I have worn many masks, so I can master my environment. My ability to perform as a “functional” human being has been a survival mechanism and with cost to my emotional mental health and wellbeing, my quality of life. None of this helped by the gaslighting of White Professionals who tell me “it’s all in your head”.

So to them I say.

Maybe Autism in Black girls manifests how it manifests in white girls but you do not see us, actually maybe you can see us, you just choose to discount our experience, ignore our needs, invalidate our pain, erase all existence of our trauma because you do not see Black girls as human.

Warda Farah

Warda is a Speech and Language Therapist and a trustee of Autistic Girls Network

Holding it Together with Your Autistic Young Person Through Exam Times

It’s that time of year again when GCSEs and A levels loom closely (Highers have already happened for 2022 if you’re seeing this another time), and anxiety levels of teens rise. As we know, our autistic young people carry high levels of anxiety much of the time, being so often in environments that don’t support their needs, so all of the extra pressure right now is not helpful. So how can we help to keep things on a more even keel?

Make sure suitable access arrangements are in place

Access arrangements are reasonable adjustments made so that exam conditions are more equitable for pupils that need them. The most common are extra time, use of a laptop, rest breaks or provision of a reader or scribe (though there are restrictions on these in subjects like English), but they must be accommodations that are regularly used in pupils’ day to day lessons. There is a legal obligation for authorities to make these reasonable adjustments contained in the Equality Act 2010. Pupils with strong sensory needs or a difficulty with focus may also need to sit the exam in a quiet room, or one with a small group or even with only them and the invigilator. If they are in the main room with everyone else, there may be positions preferable for them such as at the back, so that they aren’t worried everyone is looking at them, or near the door so that they can leave quickly and quietly if necessary. It may also be beneficial for them to have the same seat in each exam. While these arrangements are more complicated to administer, they are all possible.

For students without an EHCP (education, health and care plan), the rules on 25% extra time have become more complicated and involve proving a difficulty in two types of cognitive processing difficulties. This means more preparation for the school to put arrangements into place, so if you are putting off a conversation, don’t!

Make sure they are aware of what’s going to happen

Just as for other unusual events, it’s important that your autistic young person understands exactly what’s going to happen, where, why and with whom. Ideally school would have a picture of the exam room from last year so that pupils can visualise what the room will look like with all those desks spaced out, and tell them what the invigilators will do, how they will be able to keep track of time and what happens if they need the toilet or in an emergency.

Make sure exam staff know about your young person’s needs

Your young person may have specific needs in an exam – for example, if they have difficulty with focus and are obviously zoned out they may need an invigilator to come close or touch the desk or even their shoulder gently (and without startling them of course) to bring them back from their zone-out. This should be discussed with your young person beforehand and the method agreed upon so that they are aware of what’s going to happen.

Likewise if your young person needs extra ‘tools’ to get through the exam, these also need to be discussed with school beforehand to make sure they are acceptable and that they won’t cause a problem in the exam. For example, phones won’t be allowed even if they are generally used for emotional regulation, because obviously they could be used to cheat, and there is the same issue with bluetooth, noise-cancelling headphones and a music playlist from a phone. But you may be able to use an iPod, ear plugs or of course ear defenders which don’t play music. The important thing is to get these tools agreed in advance.

Make sure Exam Access Arrangements (EAAs) are made in good time

While adjustments like extra time are relatively easy to sort, others such as needing modified exam papers (in large letters, dyslexia font or in braille for example) must be arranged well in advance. Don’t assume that this will all be arranged by the school SENCO – be proactive and make sure it’s happening, even if it’s written into your child’s EHCP. Mock exams can be a good test of what is needed, but even mocks need planning and if a ‘big’ adjustment is needed such as a separate room, this all has to be built into the school timetableing.

Schools are official exam centres and are inspected, so everything must be above board and they can’t change all the rules for you, however much they want to!

EEAs should not be confused with Special Considerations, which are an adjustment which is requested after the exam has been completed if the young person has undergone a difficult time such as a bereavement or an accident.

What other ways can teachers support their autistic pupils in the run up to exams?

Keep things as low pressure as possible. If in mainstream, with 10 or more different subject teachers piling on this pressure this is likely to cause high anxiety in most pupils, and at least some of your autistic pupils will probably be highly empathetic and strongly affected by the high emotions of their peers.

Think about what you are saying to the whole class. Don’t make blanket statements if they don’t apply to everyone, because your autistic pupils may well take what you say literally. These exams do not define the rest of their lives. Emphasise that we don’t know what the results will be until the Summer, so don’t make assumptions now. Pupils only need to do the best they can on the day.

Give sensible direction for revision. Short bursts with a movement break will probably work best for everyone, but breaks are vital for autistic pupils.

Keep classes calm and gentle. If we think of the ‘coke bottle effect’, your pupils are already fizzing near the top of the bottle and being shouted at or feeling told off can make your autistic pupils’ bubbles just explode right out.

Neurodivergent pupils may need extra instruction on what revision is and how to revise – break your explanation down into small steps, and of course individualise your advice depending on how your pupil learns best. It’s important too to stress that they don’t need to over-revise: perfectionism can mean they feel they need to read everything.

Minimise waiting time in big exam halls for your autistic pupils – maybe they can enter last if that’s what they would rather do.

Make sure pupils know what will happen around the exams as well as in them – what happens when they are finished? What happens in between if they have two exams on the same day? How will they know where they are supposed to be and when? Take away as much of that worry as you can.

Pupils with executive function difficulties may struggle to process all the extra actions needed for exam days so a gentle touch base with them the day before and a checklist of what is helpful to bring (and what’s not allowed) will cut down on some stress. Make sure they know where they are going, where they are going to sit and what to expect.

It’s even more important for autistic pupils to be armed with the knowledge on how to prioritise questions according to marks, because it may take them longer to process the questions. It will be helpful to sit with them and work out a way that’s good for them to skim the paper first and mark which questions need more time spent on them.

Find a way that works for them on how to transition from not revising to revising – getting started can be difficult, particularly for subjects they’re not interested in.

Check in with your autistic pupils on how they are feeling (but don’t say that – nothing worse than trying to answer “How do you feel?” for an autistic person!) and try to figure out what their worries are. It may be something very solvable, and it may be easier for them to write their worries or draw them rather than articulate them to you in speech. Remind them to use their (hopefully) proven strategies for stress and emotional regulation.

How can you as a parent support your autistic young person before exams?

Reduce demands. All demands. 

Think about what counts as a demand – obligations, expectations, choices, instructions, laws, rules, timetables, needs, signs, questions, promises, prompts, chores, requests.

Think about how many of those apply at the moment, around revision and exams. Those are unavoidable if your young person wants qualifications, but as a parent it’s in your power to remove all the demands which aren’t vital right now. The less battered by demands they feel, the better.

Be honest about exams, and qualifications, and life. Tell your young person they work very well for some paths, but not everybody needs to go down those paths. Strike a balance between doing their best and realising that the world won’t end – for them or any of their peers – if they don’t get all their GCSEs.

Without implying you think they might fail, drop into the conversation that it’s perfectly possible to retake Maths and English GCSEs – the only ones which really matter in terms of doing what you want to do – at a later date.

Make sure your young person knows that whatever the results, it’s not a reflection on them and it’s not part of their identity. Exam results test what can be recalled on one part of a day in one system which is set up to the disadvantage of neurodivergent young people. They are a stepping stone on a path, but you can take a different path.

Go on a drive with them and have a talk about what’s bothering them most at the moment. Conversations are much better where no eye contact needs to be made, and the vestibular movement of driving is likely to be a good form of soothing regulation. Don’t immediately try to fix everything that comes up, but talk about possible solutions and strategies with them. Most of all, listen, and validate what they are feeling. If some of the feelings are overly negative and don’t feel justified, offer facts to illustrate that actually this negative viewpoint might be inaccurate, but don’t labour this point if it seems to cause distress. 

If your child is a perfectionist – a pretty common trait – it can be paralysing to think that you’ll get anything less than a perfect score. This is when you need to listen, validate but make sure they don’t revise all the time or avoid chillouts. Relaxation and environments where anxiety is reduced are really important, and just as much part of healthy exam preparation as revision. It doesn’t matter how much revision you do if you’re too anxious to actually sit the exam.

If your young person has difficulty attending school at all, it’s even more important to keep everything low key. Your job now is to keep the home a calm, safe space, not to nag about revision. Adding pressure will not be productive. Consider the best chance of enabling them to attend on exam days and aim for that ideal.

If heightened anxiety makes your young person restrict their eating, don’t push any food other than the food which feels safe to them. Over the exam period, provide their favourite easy foods and snacks, and no surprises. Leave snacks around so that eating is less demanding.

If heightened anxiety makes the sensory aspect of clothing more difficult, think about your laundry schedule and don’t wash their favourite pair of jeans/ their school trousers the day before an exam. Make sure they have their most comfortable clothing available so that sensory difficulties don’t make the morning worse.

Your young person might be prone to catastrophising – when they put the worst possible slant on what might happen, and this can seem very negative. But make sure that you’re not doing that too. You’re worried about them at this anxious time, but they might just as well surprise you.

Plan after-exam treats, but only ones your young person will like or have capacity for after a long, stressful, exhausting day. 

And cross each exam off as it’s done – one step closer to Summer freedom.

A Q&A with Aoife Dooley

A Q&A with Aoife Dooley, author of Frankie’s World, award winning Illustrator and comedian from Dublin, Ireland.

Aoife shares with us her experiences of being diagnosed as Autistic at the age of 27, and how a diagnosis helped her to truly understand herself.

Thank you Aoife for taking the time to answer our questions. 

1) We have many girls and women in our Facebook group (8.9k members) who have been recognised as autistic quite late in their lives, and it has been life-changing for them. What was your experience?

It was definitely life changing for me, too. It felt kind of bizarre in a way – I’d wondered all my life why I struggled with certain things, why I behaved differently to others, and why I found social situations hard. When I got my diagnosis at 27 I could finally begin to understand myself and in turn it helped others close to me to understand me better too. It was a relief to know I was not alone.

2) What gave you the idea for Frankie’s World and why did you decide to create it in this format?

Frankie’s World is loosely based on my own experiences growing up and finding it difficult understanding why I felt so different. I was a reluctant reader but enjoyed reading comic strips in the local paper when I was a kid so I wanted to create something visual for that reason.

3) You have called Frankie’s World ‘a love letter to being different’. How easy has it been for you to embrace being different and how would you help a young person to be able to accept and embrace their differences when it may make them stand out?

I liked being different, I just didn’t like how people treated me for being different so that made it hard. I loved metal music and dressing in all black and even though I stood out in that way, I still tried to blend in. I think when you’re young, it can be quite difficult to be yourself a lot of the time. There’s a part of you that really doesn’t want to care what others think but it is hard to internalise those feelings sometimes. For me, it was learning to love myself and accept who I am. I think one of the big things I learned was that you are not the things others say you are. The only thing that matters is what you think of yourself.

4) Do you wish you had been diagnosed earlier? What things might have been different for you if you had been diagnosed before secondary school, for example?

Yes, I think it would have been helpful to know. In school I was sleeping a lot, and when I wasn’t sleeping I was bored (and when I was bored I would act like the class clown) and that would get me in trouble often. I felt like I was really trying and everyone around me thought I was barely trying. I think I was overlooked and had to find my own ways to cope (and I think drawing was one of those things). It would have been great to be able to understand myself a little better at that age because I definitely blamed myself about things that weren’t my fault and now looking back as an adult I’m proud of those differences or things that I tried to hide that I didn’t understand at the time.

5) How did you decide what you wanted to do with your life and how easy has it been to carve out a career?

Drawing for me was therapeutic and I knew I wanted to do something creative when I was older. I didn’t have an interest in anything else. By the time I got to college I was studying graphic design and created zines and books based on where I grew up. After college, I worked as a freelance illustrator and it wasn’t easy getting started, but putting myself out there and creating work that I enjoyed definitely helped me to gain confidence and enter exhibitions where I would meet people and network.

6) What advice would you give young autistic girls reading Frankie’s World?

To know that you’re not alone and that it’s ok to be different. Also, that being kind can change someone’s life! It feels like a cliché thing to say but I can’t count the number of occasions that someone else’s kindness impacted me immensely and brightened my world. It’s a very simple thing that everyone can do.

7) Finally, is there any advice you would give to adults who are caring for or working with girls?

Speaking from my own experience I think to support special interests. Listen. If you see someone struggling do try to help. I would have really liked an adult to understand how I was feeling in school and reach out to me or my parents at the time. I have been hearing in recent years though this has been happening more which is great. I think that it can only help kids to understand themselves better and those around them too.

Find Frankie’s World alongside many other recommended books, links, Youtube channels and apps on our resources page. 

The publishers Scholastic have very kindly given us a copy of Frankie’s World to giveaway. In order to be in with a chance of winning, please enter your email address below. 

Giveaway closes March 7th 2022 at 23:59.

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Aoife Dooley, Author
Credit Ruth Medjber
Frankie's World

Backward Steps: the link between autism and EDS

Yesterday was a low steps day for me as part of Autistic Girls Network’s Million Steps Challenge. In part this was due to return to work, but more relevant was my decision to tackle the literal piles of paperwork relating to my child, and to reflect upon the profound impact that the failure of systems and services has had upon all of our lives.

I’m not really sure where the best place to start is – perhaps, a bit like the paperwork, my recollection of events is jumbled and lacks chronology. So I’ll begin with a whole series of appointments that I had entirely forgotten about.

Pain. Profound, but unexplained pain. Constant pain. Physical pain that was entirely invalidated.

Relevant background is that our kid suffered ‘growing pains’ as an infant and primary aged child, and experienced lots of digestive issues – nothing to flag to a doctor, but a constant, in the background. When they hit adolescence, the pain manifested itself in their ankles, knees and hips. They had been really good at sports and hugely enjoyed them, but suddenly, the ferocity of the pain prevented this. The GP drew blanks and suggested physio. The private physio suggested Osgood Sclatters and prescribed a series of exercises, but the pain continued.

Then came the mental health crisis (more in a different piece of writing) where we had to focus on simply keeping our teenager alive and eating, and when we eventually received an autism diagnosis (but critically, not an ADHD one at the same time).

So, we had a child who was marginally more stable in mental health terms, but not able to be physically active when they chose to. The EHCP physical examination – from an ‘autism expert paediatrician’ looked for Marfans Syndrome, but rejected any consideration of hypermobility based on the Beighton Scale. By this stage our youngster was experiencing hip and shoulder, wrist and knee joints overextending and ‘popping’ out of joint. And the pain was often preventing them from sleeping.

We were referred to Rheumatology after lots of asking – the consultant explained that they see a lot of autistic young people with joint pain, but Connective Tissue disorders are not diagnosed locally so they couldn’t help. Perhaps take paracetamol?

We were referred to podiatry, but they couldn’t see anything wrong so referred to physio. Physio suggested some exercises but were unable to help. The incapacitation was really affecting our youngster and they self-advocated for extra support – the brilliant GP suggested codeine for the worst episodes, and eventually our youngster was referred to the local pain clinic where more physio was recommended, and a psychologist to help ‘think through the pain’.

None of these services were connected. None share notes. Each one required an appointment at our local childrens’ hospital; each one required a whole telling and retelling of the history. Each one required a different person to physically touch and examine our child. And all in the same environment where we had attended for some of the worst outcomes of the mental health crisis. No records were passed back to CAMHS or to any ‘autism expert’. And our child was constantly triggered and consistently dismissed. How bad could the pain be? Did they think it could be psychological?

And as my kid’s advocate and constant companion, I can see exactly how easy it would be to accuse me of FII (Fabricated Induced Illness). Because the pain WAS real, and there is a very good and plausible reason for it. Its just not diagnosed where we live. And because of that, my child was totally invalidated and told the pain was without a physical basis, and they could ‘think themselves out of it’?

Hence the rotating through various diagnosticians and services. Hence the piles of letters in my disorganised filing system.

My child meets all of the criteria for Ehlers Danlos Syndrome, considered a ‘rare disease’, unless you are Neurodivergent, then the incidence rate is very high compared to the ‘general population.’

And because of that lack of knowledge and understanding, the lack of ‘connecting the dots’, we entered a cycle of being told that there was no reason that they could be in the pain that they described. All of my child’s digestive difficulties, joint pain and dislocations, even their dysautonomic symptoms (I have also blanked the memory of an afternoon spent in the cardiology unit checking their heart output), their asthma, their rapidly developing skin rashes, their migraines – all of them can be explained by EDS.

It literally pains me to think that if we had one clinic in each region where an autistic person could go for a full physical health assessment, we could have real integrated and inclusive support. So much money could be saved, so much agony could be avoided. And we might have a chance to explore conditions like EDS in good time and with enough compassion for a sufferer to have a better self-understanding and potential for specialised and tailored support.

As a parent and advocate with my child, I have seen such little expertise in terms of the autistic experience outside of autistic-led groups. We need to do better. My child deserves better.

What ifs:

What if we had centres in each region that dealt with all experiences of Neurodivergence, including assessment and diagnosis, post-diagnostic support, adapted therapies where co-occurring mental health conditions are identified, adapted therapies for other crises – like bereavement, traumatic events, EHCP plan writing for school aged people. And also, medical issues that might be specific to ND folk, or where ‘standard care’ might be hard to access – visual processing identification and support, auditory processing and support, experiences of pain and joint mobility, disordered eating – even maternity care for pregnant people? Where records are kept and issues joined up. Where MDTs are exactly that, not siloed in mental health services.

Epilogue: whilst my child doesn’t yet have a formal diagnosis of EDS, we are using strategies from the excellent support groups on line to help manage their pain, and mitigate the worst experiences. Additionally, we have visited a private orthotics clinic where they have been fitted for joint supports which help them whilst walking long distances. We have a wheel chair for when the pain is really bad, but when they want to go out. They still can’t participate in team sports which is something they loved, and was undoubtedly helpful to their ADHD profile as well as a sense of physical wellbeing. But we’re getting there.

If you would like to understand more about EDS look here:

We must bring an end to the diagnostic odyssey of rare diseases – GOV.UK (www.gov.uk).

https://www.ehlers-danlos.org/

If you think a child or young person you know has EDS this will be useful to send to their school: https://theschooltoolkit.org/

An Autistic Friendly Christmas

autistic friendly christmas

It’s a fact that Christmas can be difficult for autistic people. This is nothing to do with not wanting to celebrate, or not wanting to get presents, or not liking (stimmy!) Christmas lights. It’s because an autistic person’s idea of what constitutes fun may be different to yours if you aren’t autistic. And that’s difficult when your idea of fun is seen as ‘tradition’ and what ‘must’ happen at Christmas. I’m going to be asking you to open your mind to the possibility that Christmas can be different, and that’s perfectly OK.

I love Christmas. But I will be honest with you, the Christmas experience I have now is very different to the Christmas experience I had 10 or 20 or even 40 years ago. And that’s fine, because it’s the Christmas experience we have figured out works best for us as a neurodivergent family. We are lucky that we have a lovely and understanding extended family too, who don’t put pressure on us to conform to a stereotypical idea of what Christmas should look like.

When thinking about Christmas for your neurodivergent family, there’s no SHOULD involved. And your ideal day/week might very well look quite different to that of another neurodivergent family. And that’s OK.

You can donate here to help us in the work we do to support both autistic girls and women and their extended families at all times of year.

Why can Christmas be difficult for autistic people?

Christmas in Western society is considered to be a very special time, a national holiday with huge expectations round it, and definitely happy families spending time together. But the image of Christmas we have today, of bulging sacks and stockings and a huge roast dinner on the table, has only relatively recently become the default, and lots of countries have quite different traditions too. This social expectation can feel quite false and performative to neurodivergent people. Why is this the way it ‘should’ be? Who said so?

Christmas brings change, and for autistic people, uncertainty = anxiety. This is especially true of autistic children and young people who aren’t involved in the planning at home or at school. While there may be Christmas traditions that your children learn, life in general is all a huge change from December onwards – different activities in schools (including pressurising and demanding activities such as school concerts or nativity plays), Christmas music and completely different aisles of goods in shops, and people making demands about gift decisions.

Christmas presents themselves bring uncertainty. What is under that wrapping? Will you like it? Will you be expected to perform the social function of pretending you like it when you honestly don’t care about it at all? Magnify this for a whole sack or stocking of presents. Not all children will feel like this, but if your child wants to decide exactly what they want for Christmas, don’t insist on surprises. The surprises are for your benefit, not theirs. Don’t make, or allow someone else to make your child unwrap presents with a whole room of eyes on them – that’s a very uncomfortable experience. And some children (or adults come to that) do better with presents not wrapped at all or with a small hole in the wrapping so they can get an idea of what it is.

Christmas dinner is another big change, and there is often huge pressure to sit at the table for longer than usual (if it’s usual in your house) with extra people and different food to normal. Parents might also feel pressured to make it a special dinner, and for it to be perfect. There’s an expectation that Christmas dinner edibles can be chosen from a very limited checklist of roast dinner and puddings. But autistic people might hate Christmas dinner, or the pressure of it might be just too much on top of everything else that’s different on Christmas Day. Add crackers and hats and other sensory nightmares, and Christmas dinner might not be the special occasion for your child that you want it to be – it stands out for all the wrong reasons. Do everyone a favour – be open to the idea of pizza for Christmas Day if that’s what your child wants. You don’t have to eat it, but nobody is harmed by them eating it, without comment or judgement.

Which brings me to the elephant in the room – extended family. This is going to be different for everyone. We all have our family traditions, but at Christmas they often involve sitting down at a table with people you might not eat with very often. Those people may not be as understanding as you about your family’s neurodiverse needs. They may have expectations about behaviour and traditions which don’t fit so well with you anymore and which may cause your child to have a miserable day. If this is the case, try to educate and explain beforehand, but don’t be afraid to put your own little family first. 

How can you help?

Talk it over with your child. Try to find out whether they love or loathe Christmas, and why.

If you can discover triggers, you can change things so they don’t occur. These could be anything from opening presents or having dinner with distant relatives, sitting at the dinner table hearing people eat or long hours expected to socialise with extended family because it’s a ‘special’ day. They may wish fervently that it was a ‘normal’ day! But they may not, so personalisation is key here.  The same applies if you are an autistic adult; make sure your family are aware of your needs and how they can best help you enjoy the day.

Try not to go overboard with surprises. As with everything else, prepare your child for what’s going to be happening.

Don’t overstay a welcome and ask your guests not to do so either. Better to have a fun few hours rather than a miserable many hours.

Build in chill time either side of the big day. It’s going to be exhausting.

Don’t make a fuss if your child or family member wants to spend time on their own in their room. This may be necessary to avoid overwhelm.

Don’t put the weight of your – or anyone else’s – expectations about Christmas on your autistic family member’s shoulders. This should be fun – whatever someone’s idea of fun is.

And have a lovely Christmas – however you want it.

Cathy Wassell is CEO of Autistic Girls Network, author, Masters student and proud parent of a fully neurodivergent family.

You can donate here to help us in the work we do to support both autistic girls and women and their extended families.

For newly diagnosed Autistic young people

By Emily.

I spent nearly 17 years of my life with no idea that I had a completely different neurotype to the majority of people around me. I thought my brain was ‘typical’. After all, I seemed to blend in with my peers. But ‘blending in’ with your peers does not mean your brain is ‘typical’.

Growing up undiagnosed meant that I had to hide the fact I found a lot of things difficult, because I thought it was my fault that I found stuff hard. I thought I was the failure, not that the system around me was the one failing me.

The system stuck labels on me which were hurtful. Like being told I was ‘dramatic’, ‘sensitive’, ‘hysterical’, and had a personality disorder when I didn’t. It meant my difficulties were viewed through inappropriate lenses and I was given inappropriate support.

It meant that there was never any chance for me to have my needs met, not that having a diagnosis would have necessarily enabled this anyway. But it took that chance away and left me to blame myself for everything I couldn’t seem to do quite like everyone else.

When I opened up about certain things, people replied with “that’s normal”, “we’re all like that” and “you’re just being overdramatic”, leading me to come to the conclusion that everyone must experience things the way that I did, just I was useless in coping with those things.

I grew up believing that there was something fundamentally wrong about me. I knew that I didn’t seem to fit into the world, and because I couldn’t pinpoint why, I believed it was ME. I came to the conclusion that leaving this world was the best option.

It meant I was more vulnerable to mental health problems because of the exhaustion from masking and not understanding what was wrong with me. And so I attempted suicide numerous times, spent months in hospital and was sucked up into a system which didn’t recognise my needs.

Not being diagnosed meant I never had the chance to access support which could help. I wasn’t introduced to my SENCO at school until my final year of sixth form, when I was diagnosed. So within one year she helped me with things I should have had help with from the age of 11.

Of course, those diagnosed young face their own different barriers and difficulties due to being diagnosed. Early diagnosis is not always a privilege for everyone. Support and acceptance often is non-existent.

But in my case, I really do wonder whether 16-year-old me would have been sat in that hospital, terrified and away from everyone and everything she knew, if the reason for her feeling so out of place had been explained to her years before. If those years of developing my own maladaptive coping strategies and harming myself to try to cope with the world I felt so overwhelmed by hadn’t left me so utterly defeated. If instead those years had been spent by me learning the things I can now learn, setting boundaries for myself and realising that I don’t have to function the same way as people with a completely different neurotype do.

My learning began just after my diagnosis. Learning that I can’t hold myself to impossible standards for the rest of my life because I will burn out repeatedly and learning that I have autism-specific needs that I cannot ignore or rock bottom won’t be far away again.

I wish I could have grown up knowing who I was, or at least knowing years before I did. I know it may not have taken the pain away and I’m sure I’d have had a completely different journey with self-acceptance, but still, that bitterness that comes with late diagnosis remains.

To newly diagnosed autistic young people…I want you to know that you were never the failure, you were the one who was let down.

I want you to know that holding yourself to neurotypical standards when you are not neurotypical is impossible.

I want you to know that it’s okay to be angry, sad and upset with the world and at adults for not picking up on it. It is also okay to be upset with your diagnosis, or incredibly relieved. There is no wrong or right way to cope with finding out you are autistic.

You know now. It’s taken a long time, but now you know, and you have all the time in the world to learn what ‘autism’ means for you. You can ignore it for a while, if you like. You can jump straight in and read as much as you want to. You can claim your autistic identity and shout about it. Or you can keep it quiet. How you choose to cope is up to you. You will see lots of people telling you what is best, or what has worked for them, but only you know what is best for you. It might take you a while to get your head around the news that you are autistic, and seeing your whole life suddenly through a different lens can hit hard.

Look after yourself. You can begin to start deconstructing those incorrect labels and the hate you’ve built up towards yourself. You can begin to learn who YOU are, and YOU are an incredible human being.

Emily is a Trustee of Autistic Girls Network and, as a young autistic woman is a passionate mental health activist and autism advocate. You can find her blog here or join her 29k strong Twitter following.

Alexithymia and Autism

alexithymia

By Emily.

Most people know when they are feeling a certain way. They can identify that certain feelings in their bodies indicate certain emotions. They would recognise if they had butterflies in their stomach and would understand that this meant they were feeling nervous. But what if you didn’t know what you were feeling and why? Imagine the confusion you would feel.

The concept of alexithymia was introduced by Sifneos in 1973. The term itself literally translates to “no words for emotion” in Greek. In today’s language, this means that someone has difficulty identifying and describing the emotions that they are experiencing. Although some non-autistic people have alexithymia, it is much more common amongst autistic people. In-fact, recent research by Kinnaird, Stewart and Tchanturia (2019) found that only 4.89% of the non-autistic people in their sample had alexithymia, compared to 49.93% of autistic people. This makes sense when we consider the difficulties many autistic people have with understanding emotions, processing what is going on in their bodies and identifying different bodily needs.

Alexithymia is closely linked with interoception, the ability to identify, understand and respond to the state of the inside of our body. For whatever reason, many autistic people struggle with this. It’s this interoceptive awareness which allows us to feel things like hunger and thirst, and identify whether we are hot or cold, if we need the toilet and if we are in pain. Difficulty recognising these needs can make our daily lives much harder to navigate.

Everyone who experiences alexithymia will have varied experiences. Some can feel specific emotions, but struggle with certain ones. For example, they may find anger or sadness very easy to identify, but may be unable to feel or recognise what happiness feels like. Some understand that they are feeling something, and may even be able to tell whether it is a positive or negative emotion, but are unable to pinpoint the emotion itself. Additionally, emotions can get confused with each other. For example, in the past I have felt anxious, and only later realised it wasn’t anxiety I was feeling, but excitement. As you can imagine, struggling to identify these emotions can be really frustrating.

If you think about it, an emotion often produces a need. If I am sad, what I need to feel better is to curl up under my duvet and have a bit of a cry, then move on. If I am happy, what I need is to stay in that situation and enjoy whatever it is that is making me feel happy. But, if I did this when I was angry, without me realising it, the emotions could build up and I could have an outburst. What I need when I’m angry is to leave the situation temporarily. As you can see, not recognising or understanding the emotion being experienced, means we can’t deal with it effectively, and over time this can cause problems with emotional regulation, interpersonal effectiveness skills and relationships.

Alexithymia isn’t only about recognising emotions though. It can also be about how we experience the emotion. It can be hard for us to match our body language or facial expressions with the emotion in the way we are expected to. We may have to intentionally act out our response, remembering that if we are happy, we have to show it through our face. You know the myth that autistic people don’t have emotions? That’s why it exists. Because some of us don’t portray emotions the way we are expected to. But, this doesn’t mean we aren’t feeling anything. Many of us often get asked why we look angry or sad, when in-fact we are happy. Or we may be asked why we look happy when we are observing something sad. Ensuring that our outward self reflects our internal emotions, even when we struggle to know what these are, takes a lot of work, and it can leave us exhausted.

It can also be hard to interpret other people’s emotions, which can cause difficulties in our relationships. I have a tendency to look at someone’s face and think they are angry, even if they’re just concentrating. I look at a facial expression and I just see a face. The emotion doesn’t come with it. A study by Geoff Bird found that usually people with alexithymia can tell that there is a difference between photos of someone smiling and someone frowning, but they can’t tell which photo is of them smiling and which one is of them frowning.

Whilst alexithymia can cause a lot of difficulties, I have also found it to make me less judgemental. Because I struggle recognising facial expressions, I always ask how someone is feeling, rather than assuming. This tends to open up a more honest conversation. However, alexithymia also means I struggle knowing what my needs are, which makes it much harder for me to get my needs met. This is where I may need some support!

Emily is a Trustee of Autistic Girls Network and, as a young autistic woman is a passionate mental health activist and autism advocate. You can find her blog here or join her 29k strong Twitter following.