Safer Internet Day 2021

Common mistakes we all make, and how to rectify them

This guest piece was written for both Autistic UK and ALN-Cymru Home Education and Educated Other Than At School (HE & EOTAS) for those who need more information about how to keep themselves (and their loved ones) safe online.

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We all like to think we know exactly what we’re doing online, but the truth is we could probably all make some changes to better protect ourselves and our loved ones. Here are some common mistakes we could all make when using the internet, and some quick and easy ways to rectify them.

Using the same password for everything

I get it: you have a hundred different accounts, there’s no way you’d remember that many unique passwords, and nobody has the time to manually change them all. So ask yourself: which accounts would I most hate to lose? Personally, I wouldn’t care much if I lost the account for a forum I haven’t posted on for years, but if I lost my email or my online photo albums I’d be screwed.

Once you’ve identified your most precious accounts, log in and find the Security settings (often this can be found by clicking on your username and selecting something like ‘manage my account’). Even if you really don’t want to change your password, there will usually be something you can do here to make your account more secure (and aid in recovering it should it ever get hacked).

Top Tips:

  • Ensure your details (particularly phone number) are up-to-date.
  • Enable 2 step verification: your password will no longer be enough to access your account. If signing in from a new device or browser it will also text you a code to prove it’s really you.

I know I shouldn’t use the same one for everything, but I have trouble remembering multiple passwords.

Don’t worry; you’re not alone. But there are a few simple tricks you can still implement. Let’s say my password is bakedbeans

  • Add capitals, symbols and numbers: Baked.Beans123
  • Add the first few letters of the website to your password. For example, my Facebook password could be Baked.Beans123face while my Twitter password could be Baked.Beans123twit
  • Install a password manager app such as LastPass. This will save many a headache as you’ll never need to remember another password again: it auto-generates complicated passwords for everything, stores them securely, and inserts them for you. All you’ll need to remember is your one master password which unlocks the app. LastPass has a mobile app too, so you can access your passwords even if you’re away from your computer.

Not Switching Off

Did you know that part of your brain can’t distinguish between the stress of being on the lookout for a sabretooth tiger and the stress of being ‘on call’ for message notifications? As far as it’s concerned, you need to maintain vigilance so it’ll keep you from getting too relaxed until it feels the situation is over.

“These constant alerts jolt our stress hormones into action, igniting our fight or flight response; our heartbeats quicken, our breathing tightens, our sweat glands burst open, and our muscles contract. That response is intended to help us outrun danger, not answer a call or text from a colleague.” [1]

Now, that’s useful if you ever find yourself in a dangerous situation, but it’s a lot less helpful when you carry the source of that stress around with you 24/7.

“It sends our brain into overdrive, triggering anxiety and stress, and at the very least, hyper-vigilance, which is meant to protect ourselves from predators, not the phone,” Dr. Sanam Hafeez PsyD, a licensed psychologist and professor at Columbia University in New York City, tells Bustle. “The alerts from phones or even the anticipation of them, shuts off the prefrontal cortex that regulates higher-level cognitive functions, and instead, forces the brain to send emergency signals to the body.” [2]

Top Tips:

  • Disable stressful notifications.
  • Change others to something less intrusive (turn that loud ‘PING!’ into a gentle, brief chime).
  • Set “sleep times” on your device, or have periods when you enable Do Not Disturb mode with emergency exceptions (that way you don’t run the risk of missing urgent calls).

Eternal Scrolling

You know when you’re reading in bed and your eyelids get heavy, but you say to yourself “I’ll just finish this chapter before I put the book down”? That doesn’t work when you’re scrolling through social media. There is no end of the chapter. Go to sleep; the internet will still be there when you wake up.

Furthermore the blue light will keep part of your brain active, making it harder to enter deep sleep when you do finally drift off.

“Blue light suppresses the body’s release of melatonin, a hormone that makes us feel drowsy. While this may be helpful during the day, it becomes unhelpful at night when we’re trying to sleep. Being exposed to blue light in the evening can trick our brain into thinking it’s still daytime, disrupting circadian rhythms and leaving us feeling alert instead of tired.” [3][4]

Some people find it helpful to not keep their phone charger beside their bed to remove this temptation.

Acting Before Reading Closely

I was sitting in the front room when my phone buzzed: “We just tried delivering your parcel but you weren’t home. Please click here to arrange redelivery.” I was furious! I’m right by the front door; there’s no way I missed the doorbell. That delivery driver is a liar! I was so fuelled by moral indignation that I almost didn’t check before clicking the link… it was a scam.

Acting before taking the time to investigate is so easy to do, and it can have disastrous consequences. We are much more vulnerable to this trick when we’re angry. “What an injustice! Take action! Sign this petition! Retweet this!”…whenever you see something like this, take a breath and a step back, and see the whole picture first. Is this angry Twitter message accurately representing the situation, or are they just swept up in somebody else’s misinformed outrage? Oftentimes it’s the latter.

Don’t believe everything you read on the internet.

Seen an outrageous article? Before you share it…

  • Read the full article. Headlines can be misleading.
  • Check the date. Is it recent? If not, is there a follow-up story you should read first?
  • Is it satire? Sites like The Onion, Satiria, The Babylon Bee, etc are comedy websites written in the style of actual news articles.
  • Is it reported on multiple, unrelated news sites?

Seen a great offer? Before you buy it…

  • Google the company and read some reviews. Sites like TrustPilot are great for this.
  • Even if you know it’s legit, taking the time to think before hitting Buy is still a good idea. There might be a discount code available (Honey is a great place to check).

Got a message telling you to input your password, credit card details, etc?

  • Follow it up independently. Instead of following the link in the email, open a web browser and navigate to e.g. the National Lottery website and sign in that way.
  • Look for legal blurb at the bottom of the email. If there isn’t any, be concerned.
  • Poor spelling and grammar are often a dead giveaway that an email is a scam and not official.
  • Look at the email address (not just the name) of the sender. Does it look official?
  • Hover your mouse cursor over links to see the URL. If it says the link is to Amazon, you’d expect the link to begin with ‘https://www.amazon.co.uk/’. If it begins with something completely different, be wary.

Mistaking the Internet for Real Life

Social media is an echo chamber by design (all this means is you tend to surround yourself with and follow like-minded people). Its algorithms will bring things you’ve expressed a prior interest in to the forefront of your attention until they’re almost all you see. Engaged with a few posts about cats? Pretty soon you’ll see a disproportionate number of posts about cats. That’s not to say the topics you read about aren’t important, but be aware they are likely over-represented. What seems like a huge problem among your mutuals on Twitter may be a very real problem, but it possibly isn’t as big (or well-known) as your Twitter experience makes out. Log on with a different account to test this theory if you’re not sure: often, if it’s a well-known pressing issue then more groups of people will be talking about it, not just your bubble.

Top Tips:

  • That Instagram picture of your friend with the perfect life is not indicative of reality. To paraphrase Steven Furtick: Don’t compare your behind-the-scenes with everyone else’s highlight reel.
  • The more you engage with a topic on social media, the more of that topic you’ll see. Read depressing news, the more depressing news it’ll give you. Engage with at least one positive post (this can be as simple as Liking a cute video or something) to counter each depressing one so your timeline doesn’t look like it’s the apocalypse.

Reading the comments

Here’s a rule: if you’re likely to feel angry or upset about divisive comments on a particular topic, don’t read the comments. No matter how hard moderators try and keep things civil, comments sections on the internet are – and always will be – cesspits. Swarms of people (sometimes called ‘trolls’) are attracted to comments sections, and they have no intention of listening to others or changing their views; they are there to stir up anger. If you do decide to dip your toe in to a comments section, think of it like quicksand: remain calm, balanced, and know when it’s time to leave. Don’t jump in and thrash about angrily or you’ll be sucked in and consumed by the anger (which is what the ‘troll’ wants).

Posting Publicly

Be careful of sharing family photos and personal information. Yes, it’s lovely, but just be mindful of who can potentially see it: if something is public then anyone can see it, even if they don’t use that platform or have been blocked.

It’s easy enough to crop or add an emoji to cover up something in a photo, such as an address or school uniform logo.

Leaving Our Kids Unsupervised

The internet can be an amazing place to nurture a young mind, but it can also be harmful. As they get older it can be particularly challenging to juggle their independence and growth with our responsibility to keep them safe. Every issue we have covered in this article applies tenfold to young people: if you find it hard to stop looking at your phone at night, for them it’s almost impossible.

Fortunately there are some great tools parents can make use of. Microsoft Family Safety is a great place to start: it will let you set screen time limits, limit access to certain games/apps/websites, and more. Many devices have similar family controls, such as PlayStation Family Accounts. Additionally a lot of Smart TVs let you add PIN restrictions to particular apps (e.g. Netflix, YouTube).

Common Sense Media is a great resource for parents wondering whether a particular game/show/movie is suitable for their child.

Here are some resources for young people who want more information about how to stay safe online:

https://www.meiccymru.org/when-to-block/

https://www.meiccymru.org/be-aware-of-your-online-safety-tips-to-keep-safe/

My Best Friends Have Four Legs

Many people rely on their friends for emotional support and to be a listening ear. They seek comfort from those close to them and turn to them in time of need. This is not always easy for me. I have never really connected that well with people and always feel a bit of a burden if I share my challenges with others. Add to this several chronic health conditions and my ability to socialise is limited. 

For this reason, my animals have always been my world. Throughout my life they have been my best friends and my comfort, there have been times when they have kept me going when I felt completely alone in the world and they keep me on track by having to take care of them.

My happiest times are when I am curled up on the sofa, wrapped in a blanket with a dog at my feet and a cat purring on my lap. The closeness of an animal lowers my anxieties and makes me feel less alone. That is when I feel safe and when I feel calm.

I didn’t understand until I received my autism diagnosis just why my animals had been so important to me, now it makes complete sense. I realised I could connect with them in a way that I could not connect with people, my animals loved me unconditionally and did not place excessive social demands on me. They knew when I was sad and needed to be loved, and we didn’t need verbal communication, we did not need words. On top of that an animal does not judge me if I haven’t brushed my hair or changed out of my pyjamas, an animal does not expect me to be anything other than I am.

Following my diagnosis in 2014 I launched the Autistic Women’s Empowerment Project. I had initially planned that it would only be an online project as I was socially isolated, dealing with a serious eye condition, struggling to leave my home and to take care of myself but I still felt the need to do something even if it were just to raise awareness. In June 2014 I was invited to attend The Autism Show in London alongside a company that was training service dogs to work with autistic children. The founder invited me along to promote The AWE project on her stand and instead of being excited I was filled with fear. I had no idea how I would interact with that many people and in such a loud and busy environment, but I was passionate about the recognition of autism in females and I really wanted to do it, so for three weeks I prepared myself. I wrote myself scripts for every possible scenario you could think of and worked out my own social story of what to expect. I watched virtual films of the venue and used google maps to explore the surrounding area to try and prepare myself. I had never visited London or a large exhibition centre before, so my anxieties were huge. Right until the last minute my brain was telling me to run away and presenting me 1000 reasons why I could not and should not even attempt it.

However, despite the overwhelming anxiety, I did manage to push myself beyond my limits which was an amazing achievement for me as I find social interaction difficult and crowded environments extremely overloading. The service dog that attended with us was amazing support. The support of a dog lessened my anxieties. I spent two days with her before the show so that she could learn my ways and her handler worked with me on strategies to lessen my anxiety and to help lessen the sensory overload that would be inescapable.

I didn’t think I would make it, but I did it I overcame my fear. We went over and over the plan and so we were prepared for what to expect. With the dog’s support I made it through the whole show and even managed to have a browse around the stalls. Whenever I had to go outside or walk-through busy environments she was there; she instinctively knew that I had a blind side and steered me away from people and objects. With the help of dark glasses and ear defenders and the interaction of my new canine friend I got through the weekend.

The first day I mostly spent on the floor with the dog interacting with the children especially those who were non-verbal as I have a good knowledge of Makaton. It was heart-warming and inspiring to see the children interact with her; she spent hours playing ball with what seemed like 100s of children. We were by far the busiest stand in the show and we got many repeated visits. 

By the second day I felt comfortable enough to begin interacting with the parents as well as the children and I listened to their stories which is one of the biggest reasons I became a campaigner and advocate. I know I could not have done it without the support of that wonderful pup. 

I have had dogs and cats all my life. Animals have always played a big part in our family; more than just pets they are members of the tribe. Both my son and my daughter are autistic, and their pets have been their best friends whilst they have been growing up. We have had many cats and dogs throughout the years. Many of whom have been rescue animals that no one else wanted.

When I was younger, I volunteered for the Cats Protection League and rehomed many old or unwell cats who were often overlooked when people were looking to home a rescue cat. My home often looked like a retirement home for cats. Many of the dogs my children had when youngsters were also older dogs who just needed a family. It was not just about the love the animal gave to us, it was the love our family gave to the animal and the skills having a pet taught my children. Now that my children have grown up and have their own lives and homes, my pets have become not just companions but also my emotional support.

I had always thought of myself of more of a cat person. I currently have four cats all with very different personalities and they too are wonderful company and emotional support. They help me have a routine no matter how much difficulty I am having with executive functioning they will remind me they need feeding, which then reminds me I need to eat. They keep me company when I’m working, me the computer a line of them sit intently watching; I usually having to push one of them off the laptop. The one limitation of a cat is they don’t like being on a lead and are not very keen on sightseeing. So, after my experiences at the Autism Show I knew I had to get me a dog.

I needed to find a way to overcome my anxieties and to calm my sensory system and for me the answer was my dog. I have always had dogs that complimented the personality and needs of my children. This time I chose my dog specifically for me. Boo the Welsh sheepdog came home when he was eight weeks old. He came from working stock from a Denbighshire farm, Mom and Dad were both working sheepdogs, but he was the runt of the litter and had been bullied a bit which led to him been of quite an anxious nature and we hit it off immediately. He picked me which made up my mind. He understood my anxiety and I understood his and our bond just grows stronger every year. He has loved having me at home all the time during lockdown, though he has missed the new toys that came when I returned from business trips.

Boo is far more than just a family pet. He has been with me six years now. He is very loyal and intuitive, and he has grown into an amazing companion. He learnt quickly that his barking was painful for me and will now only bark if there is something dangerous, such as a smell of smoke or if someone attempted to get into the house. He has learnt to recognise when I am anxious or sad and when I am in sensory overload and he interacts dependent on my mood. I need proprioceptive pressure when I am stressed to regulate my system, just the weight of the dog on my legs relieves the stress and the pain, and he knows intuitively when I need that. 

He is not registered as a service dog, so there is a limit to the places I can take him but despite this he has encouraged me to explore many places that I wouldn’t have gone alone. Each day he learns another skill that helps me and him interact with the world. He encourages me to go out and get fresh air and his presence lowers my anxiety. I really feel a dog gives me a sense of safety and security but also a true sense of companionship that I don’t get from other people. I often find that having a dog encourages communication with others, even if it is just talking about our dogs and how lovely they are. I struggle with communication but it’s easier to make conversation over a shared interest and I never have a problem talking to my dog. He doesn’t care if I stammer or stumble over words. He is often my audience if I need to practice a talk or presentation and as he is getting older he is getting quiet vocal himself.

The best thing about my work with Autistic UK being done at home is not having to leave Boo. He really deserves the label of wonder dog. He is amazing emotional support. He rarely leaves my side. I know he sees himself as an assistance dog. I just never thought it would be an admin assistant. He has become really interested in my work and loves nothing more than joining in a Skype call or even Autistic UK team meetings and he is very good at giving me a hint at 1am that it really is time to go to bed. In fact, he is looking at me and trying to rush me along now.

Both Me and Boo have been a bit lazy since lockdown last March and haven’t been out much. We have spent lots of time in the garden, but I haven’t had much time for walks. Despite barely stepping outside my house since March of last year I have actually been busier than ever and Boo’s walks have been a bit neglected. Luckily Boo is also a bit of a television addict and a couch potato and he is more than happy to curl up on his chair with a doggy film on while I am working away, and we have thoroughly enjoyed watching the Disney channel together. But all this sitting around has had an impact on both our waistlines, and we do need to get some exercise and fresh air. So, we are going to use #Walk your Dog Month to get outside a bit more. 

Here’s a few photos of my boy. We would love to hear your stories about your animal buddies.

National Play Day 2020

Due to the COVID-19 pandemic, rather than organising collective events across the UK National Play Day 2020 is focusing on children’s rights to play at home. We’re increasingly being told about the importance of play, and there’s copious research into why this is, however when you’re Autistic and/or the parent of an Autistic child, most sentences which include the word “play” in relation to your child are telling you about how they’re “not playing correctly,” or they’re “only doing parallel play rather than cooperative play,” all heading to the climactic “we need to teach your child how to play.”

Wait, what?

Numerous dictionary definitions state that when people play they’re spending time doing enjoyable things; doing things for pleasure; doing things for fun. So how on earth can anyone be doing it wrong?

National Play Day state that:

Playing is fun and is central to children’s happiness

Playing helps children’s physical, mental and emotional health and well-being

Playing boosts children’s resilience, enabling them to cope with stress, anxiety and challenges

Playing supports children to develop confidence, creativity and problem-solving skills

Playing contributes to children’s learning and development.

Nowhere does it state that playing is prescriptive and must follow a set pattern. Neither does it state that “proper play” means pretending to drive a toy car down an imaginary road rather than lining it up, while also meaning that a banana is also a phone and not always just food.

I’d planned to write an article about the differences between non-Autistic and Autistic play, citing research as well as my own experiences as an Autistic parent of Neurodivergent children, however when I started to do search for things to back up (or disprove – I’m not shy about being told I was wrong) what my (and others I know) experiences are, all I could find were research documents pertaining to non-Autistic children, and hundreds of articles about how to “make” your Autistic child play like everyone else. At this point the plan went out of the window – I could say I threw my toys out of the pram, but that wouldn’t be very appropriate of me, would it?

Instead I want to use this as a springboard to start a discussion:

  • How did you play as an Autistic child?
  • How do you play as an Autistic adult?
  • What are your Autistic child’s favourite games?

Before going further, I just need to say it loudly for the people at the back:

Forcing Autistic children to “play appropriately” is a contradiction of play. You are making them work.

Play is important for so many reasons. It helps children practice skills they’ll need later in life, and current pedagogy uses play with younger children as the main basis of teaching: Learning Through Play seems to be the tagline of most Foundation Phase (KS1) departments. Play is so important that it’s article 31 in the UN Convention of the Rights of the Child which is enshrined in law in Wales.

Among the research, common themes of play being important for recreation and relaxation dominate the results, so why when we have Autistic children – who are often autonomy seekers in a world where they have to work hard to conform – do we turn their play into another therapy/learning opportunity/social skills lesson? Why can’t they play the way they want? Why must we steal what little autonomy and self-regulation they have?

Play is also described as a cathartic activity in which people (particularly children) express their feelings, get rid of negative emotions, and replace them with positive ones. Do you think that by telling a child that they can’t solo-spin on the playground because they should be playing tag with the rest of the class is cathartic for them? Are they going to be able to express their feelings? Or are they having to ignore their needs for the sake of your tick box exercise?

Instead of changing the Autistic’s method of playing, join them! Spin, jump, flap, line up toys, play a couple of hours of Minecraft, whatever it is that they want to do. The main focus should be on having fun.

 

References

National Play Day (2020), Home Page, [online]. Available at https://www.playday.org.uk/ (Accessed 03/08/2020)

Oxford Learner’s Dictionaries (2020), Play [Verb], [online]. Available at https://www.oxfordlearnersdictionaries.com/definition/english/play_1 (Accessed 03/08/2020)

International Day of Friendship – 30th July 2020

Today is the International Day of Friendship, and to mark to occasion I wanted to write about some of the myths surrounding friendship and Autistic people.

If media and outdated medical opinions are to be believed, Autistic people can’t make friends. We’re aloof, bluntly honest to the point of being rude, don’t like the company of others, and only tolerate people if their presence is of benefit to us. Except the media and medical opinions are complete nonsense, and actively damage our community.

One of the most common reasons parents are given by medics who refuse to give their child an autism diagnosis is, “he/she is too sociable,” or, “but they have friends.” Our social communication differences have somehow become equated with an inability or desire for companionship, and despite Autistic adults protesting this theory, it seems to have stuck. A plethora of adults have been refused diagnosis because they’re able to have romantic relationships and are, heaven forbid, even married!

This assumption has caused deeper wounds for those who are more able to mask their differences or become social chameleons, regardless of the damage it does to their wellbeing. As this typically affects females in higher proportions to males (both trans and cis women and girls), understandably a lot of work has been dedicated by advocates and some professionals into establishing a set of ‘female’ Autistic characteristics due to their under-diagnosis. However, this has meant that those who present as male in clinic have missed diagnosis when it’s possible they would have received one if measured against ‘female’ characteristics.

Those Autistics who do get diagnosed while young – possibly because they are happier alone, or because they have had difficulties making and keeping friends in school – are often placed into therapies or social skills classes which have a primary aim of making the Autistic person change the way they interact with people to meet the needs of non-Autistic people. They’re told, “this is the only way to make friends,” and that their methods of interacting, communicating, and (in many cases) playing are wrong. Being made to follow programmes designed by non-Autistics to get Autistics to ‘fit in’ mean that these Autistics either join the huge numbers of us who mask, or continue to feel isolated while also developing self-esteem and mental health difficulties. Wouldn’t you if you were told the reason you don’t have friends is because who you are is inherently wrong? Remove the focus from social skills classes to helping Autistics find their community – friendships will then naturally bloom and flourish.

Why do the non-Autistics get to be who they are? Why is it okay for other children to be lifted up, told to be proud of being different, and that they can be who they want to be, when the Autistics get the addendum: but not like that? Is it any wonder that by the time we reach adulthood, regardless of when we were diagnosed, most of us have at least one co-occurring mental health condition?

However, it’s not all doom and gloom, for the arrival of social media (and the internet in general) has changed the face of friendship for so many of us. I don’t dispute that there are toxic elements to social media, but for Autistic people – especially those diagnosed late – it’s where we finally find our tribe. There are a huge number of Autistic social groups online. From hashtags on Twitter (#AllAutistics #ActuallyAutistic and #ADHDAutism to begin with) to Facebook groups (Neurodiversity UK, Autism Inclusivity, Autism Late Diagnosis Support and Education are all good starting places), these are places which – often for the first time – Autistic people feel supported and find people they can relate to. For so many of us most of our friends are online, so please don’t assume that we’re being antisocial for looking at our phones.

During the COVID-19 pandemic, many Autistic people have said that they have been able to socialise and keep up with friends more than they did pre-pandemic. Not having to go into the office and/or commute means there’s more mental energy for time with friends, and its online nature (including online quizzes, virtual pubs, and gaming) means that participation is far easier, so they feel more connected. I know I’ve socialised more with some of my non-Autistic ‘mum friends’ far more regularly than I would if it was in person.

When we branch out of the digital realm and meet fellow Autistics in person, we rarely have the same level of awkwardness, anxiety, and misunderstanding as we do when we try to socialise with non-Autistics. This is seemingly at odds with the assumptions non-Autistics have of us which were discussed at the start of this article, and is why Autistics believe that it’s not completely accurate to state that we have social communication difficulties, rather social communication differences. We can often communicate extremely well with others who share our neurotype, regardless of whether or not we speak. We may not always understand what non-Autistic people are trying to communicate, but actually they also don’t understand us. Communication is a two-way street, and of course we’re going to be exhausted by trying to maintain friendships with non-Autistics who expect us to walk a ‘one-way road’ to communicative harmony: at least meet us half-way!

Don’t assume that Autistic people have no desire to make friends. Educate people when they claim that Autistic people cannot make friends. Understand that online friendship and companionship is valid, and can be just as fulfilling (if not more so) than in-person relationships, particularly for Autistics. On this International Day of Friendship, if you are friends with a neurodivergent person, ask yourself: are you making them do all of the work? Are you expecting them to change their communication style without thinking about adapting your own? Do you make assumptions about their abilities, needs and desires based on their neurotype? If so, please consider whether or not you could help your friend further and make life easier for them. And please, at the very least, meet them half-way.

Are Autistics empowered during pregnancy and labour in line with the ICPD?

Today (11th July 2020) is World Population Day which “this year calls for global attention to the unfinished business of the 1994 International Conference on Population and Development” (ICPD).[1]

The ICPD met in Cairo in 1994 and 179 governments adopted a Programme of Action relating to reproductive health and the empowerment of women. ICPD is “often used as a shorthand to refer to the global consensus that reproductive health and rights are human rights.”[2]

[Before I continue, I’d like to thank Hayley Morgan for her guidance and direction to some of the only academic articles out there regarding this matter.]

Despite this consensus, many Autistic women (and those non-binary and otherwise gendered people who have given birth), report that the support (or lack of) they received during pregnancy and birth from their medical teams was not reflective of their needs. A study of women with intellectual and developmental disabilities conducted in 2015 by Potvin, Brown and Cobigo found that a “high level of available support was not always perceived as beneficial” and that “social support is perceived as most effective when three conditions are met: (1) support is accessible, (2) support is provided by individuals expressing positive attitudes towards the pregnancy, and (3) autonomy is valued.”[3] The study concludes that there’s a lack of accessible information for developmentally disabled women, and that maternity care providers should “be aware of stigmatizing attitudes and respect the autonomy of pregnant women with IDD as they prepare for motherhood.”

For pregnant Autistics, not only is there a lack of accessible information for those who need it, there’s a lack of information full stop. If you Google ‘pregnant and Autistic’ or ‘Autistic pregnancy’ the results include a plethora of articles speculating about whether or not you can ‘prevent autism’, articles listing the ‘risk factors for having an Autistic child’, a small handful of academic research papers which are often behind paywalls, and (from the first 10 pages of the Google search results) a couple of articles containing the experiences of actually Autistic people who have experienced pregnancy and birth.

Pregnant people often spend at least some time researching what to expect during pregnancy and birth – there’s an abundance of books, articles, websites and forums highlighting this fact – yet pregnant Autistics and Autistic parents have been accused of Fabricated or Induced Illness due to the volume of research they have conducted and their use of medical – rather than colloquial – terminology in appointments. This is discussed in a 2017 article by The Guardian in which Autistic women report their experiences of motherhood including fears of putting “professionals’ backs up and [being] accused of causing or fabricating their children’s condition” and being “terrified their children will be removed from them if social workers misinterpret their autistic traits as indicating potential harm to the child.”[4]

It’s also reported that the experiences of pregnancy and birth for Autistics are quite different from their non-Autistic counterparts, and that sensory differences (for example) were dismissed as ‘not possible’ by their midwifery team. An article on Tommy’s (the miscarriage and baby loss charity) website features Rachel, an Autistic mum who has experienced multiple miscarriages. Rachel talks about how she (along with “many Autistic mothers”) are “very aware of their internal body state and knew things about their pregnancy before the textbooks said they should” which meant that she was more acutely aware of pregnancies she had lost in the early stages of conception. Rachel also discusses the difficulties Autistics have with processing pregnancy loss, and that “some may not process what has happened immediately or even within the weeks and months that follow the loss.” This processing delay coupled with reduced social networks reported by Autistics (corroborated by Potvin, Brown and Cobigo’s aforementioned study) contribute to the “isolation and detriment [pregnancy and baby loss] causes to mental health.”[5]

A study published in Women and Birth in 2017 explores the sensory differences reported by pregnant Autistics alongside other reported challenges they face. The review of current literature and its supplementary anecdotal evidence from blogs found that Autistic women “reported that they needed to feel more empowered about the circumstances of their giving birth and that they relied on three factors during their experience—clear communication, sensory adjustments and change management.” It highlights issues faced by Autistic people more generally – hospitals being noisy environments and touch which “may bewelcomed by many patients can be the cause of pain or distress for the [Autistic person].”[6]

Therefore, Autistic UK recommend that the needs of Autistic women, non-binary, and otherwise gendered people who give birth are reviewed and recognised in accordance with ICPD. Midwifery teams need to receive clear guidance and training from Autistics with lived experience in order to ensure the needs of all pregnant Autistics are recognised and met. There are a number of Autistic professionals with experience in this area, including Hayley Morgan MSc, who are able to provide talks and training regarding the Autistic experience of pregnancy and birth in order to achieve positive outcomes for both the Autistic person and their baby.

References

[1] United Nations (2020), ‘World Population Day July 11’ (Online) accessed 9th July 2020. Available at https://www.un.org/en/events/populationday/

[2] United Nations Population Fund (2019), ‘Explainer: What is the ICPD and why does it matter?’ (Online) accessed 9th July 2020. Available at https://www.un.org/en/events/populationday/

[3] Potvin, LA, Brown, HK & Cobigo, V (2016), ‘Social Support Received by Women With Intellectual and Developmental Disabilities During Pregnancy and Childbirth: An Exploratory Qualitative Study’ Midwifery, Vol. 37, pp 57-64 (Online) accessed 9th July 2020. Available at https://pubmed.ncbi.nlm.nih.gov/27217238/

[4] Hill, A (2017) ‘Mothers with autism: ‘I mothered my children in a very different way’’ The Guardian (Online) accessed 9th July 2020. Available at https://www.theguardian.com/lifeandstyle/2017/apr/15/women-autistic-mothers-undiagnosed-children

[5] Rachel (ND) ‘Recurrent miscarriage and being autistic’ Tommy’s (Online) accessed 9th July 2020. Available at https://www.tommys.org/our-organisation/help-and-support/baby-loss-stories/recurrent-miscarriage-and-being-autistic

[6] Rogers, C, Lepherd, L, Ganguly, R, & Jacob-Rogers, S (2017), ‘Perinatal issues for women with high functioning autism spectrum disorder’ Women and Birth Vol. 30 Iss. 2, pp e89-e95 (Online) accessed 9th July 2020. Available at https://www.sciencedirect.com/science/article/pii/S1871519216301287

What’s in your bag? A Conference Survival Pack;

Lydia Wilkins is a trainee journalist and Blogger. She blogs to document her Asperger’s Syndrome. Her hero is Harold Evans (investigative journalist). Her special interest is the poetry of Sylvia Plath.  Lydia’s blog can be found at Mademoisellewomen.com

 

 

 

What’s in my bag for conference day?

 

My name is Lydia Wilkins; I am eighteen, and I have Aspergers Syndrome. I document this over on my blog at mademoisellewomen.com.

 

One of the things that I find hardest is to adapt to situations-be it social (when I was at school), or getting a train from A to B. Usually this takes a lot of planning-I talk my route through with someone, write instructions out, check train websites in case of strikes.

 

But I also think that being prepared with what you bring along with you can be a big help. For that reason, I am going to show you what’s in my bag for conference day. (Sadly I can’t come as I live too far away, and I have the exam that day. However, this is what I take with me to any other event in my capacity as a trainee journalist and as an individual with Aspergers.

 

The bag:

This is the bag I keep for ‘best’-to be smart, I guess. It’s from New Look, and you can buy it here.

The idea of the bag is to carry all I need for the day, but also to be comfortable-so not too weighted, and not to go against my sensory needs. (Some material I cannot stand the feel of.)

 

What’s inside?

 

A Picture of the contents of the Author's bag.
This is what’s inside my bag!

Short answer: a lot. There’s a lot of stuff-some things are essential, but some are for me to adapt to my surroundings:

Essentials for travelling:

 

When travelling, I usually make a list of what to pack first, as not to miss out what is essential. In my bag you can see my purse (in blue); this has money for food, if there’s an emergency, etc. Towards the front you can see my ‘travelling essentials’; tickets, a card holder (for railcard, said tickets, and my press cards), and underneath is the instructions for travel. I also take a phone charger with me in case of emergency. Oh, and my door key.

 

For the conference:

 

I have a notebook with me (although I do take it with me wherever I go.) The notebook with books on the front is acting as my jotter-so, if there’s anything important, like a guest speaker or lecture, I can take notes. It’s also an important tool for networking. I also have a collection of pens. So I don’t run out, and I have a variety to suit me-a Bic makes my handwriting neater, but a pencil is for doodling. I also take a perfume bottle (albeit tiny) with me; there are also a variety of lip products. This is to be a little bit more professional by blending into, and adapting to, my surroundings. There’s also the post-its for quick jottings.

 

For me being on Spectrum:

 

A lot of what is in my bag derives directly to me being on spectrum, and the need to adapt to new surroundings:

 

Planner: This is my moleskin daily planner (hardcover, large). It keeps track of all my appointments. As well as this, it also notes when my blog posts are going live, when members of my family are away, what time to get trains, etc. Without it, I would be lost.

 

Dr Paw Paw: Can you see the pink peach tube to the left  (bottom) of the photo? This is a multi-purpose balm, and is one of the few products that meets my sensory needs. It can sculpt hair, as a blush, as hand cream, for dry skin.

 

Headphones: Noise is overwhelming. Plugged into my phone, this blocks this out. And it’s useful for on the train.

 

What is in your bag?