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.

I Will Not Stand By This

I will not stand by this.
Written by Bex Ryan

Today marks the month and the week
I must do something so important to me
Do you wonder how much I feel in my body?
Do I do what people think what I am doing
I leave that with you to think about that.

I thought so long to saying this
A new month will be the beginning of my journey
The steps I take in and the words I hear I breath out
I meant every word what I just said.

This week has finally come
I must do something about that
Something I really care about
Do you know what that could be?

The strength I take in
That thought came to me just in time
I feel this is the right time for me to write this
I do wonder myself if this is the right time for me to
do this now.

I will not stand by this no more
I will strive my best at work
I will join in
I will come to you and you come to me
You brought this to my attention.

We will be together
We will have each other
We might have more friends we thought we did
We will have the world and the people
For month and week, we all care about it.
This is important that we all take part in this.

Anti-Bullying Week: willow’s Blog

I am an Autistic advocate and a lived experience advisor, and this means that I am expected to put myself out for public scrutiny. There are those who think that as an advocate you have to share every aspect of your life there are also negative individuals in the world who will create their own version of your story to point score and turn people against you or just to create drama and scandal.

This week is anti-bullying week and at Autistic UK CIC we have a hash tag:

#IHaveABully

We are going to be sharing useful information on the different types of bullying, and we are also putting together a list of up to date resources to add to the Autistic UK CIC website. We will be delving deeply into this subject looking at everything from definitions to long term impacts.

Some of us feel strong enough to share our stories on our blog and this is my attempt to put my thoughts together in a clear way. This has been such a difficult post to write and it has led to a lot of flashbacks and tears. I have c-PTSD from years of bullying and trauma because of my differences, and I am not ashamed to say that I still have scars.

It’s not easy to talk or even write about bullying as an adult. It’s one of those unspoken subjects; a taboo.

As an advocate I have many people who share their stories of bullying with me and some of these cases have been extremely distressing. In five short years I have heard of multiple cases where bullying has been relentless, and it has had long term impacts on individuals’ wellbeing. Sadly, I know of several cases where bullies have pushed individuals into taking their own life.

People often perceive bullying as a childhood problem, but many of the experiences shared with me have been by adults who are experiencing bullying now. Just as Autistic children grow up into Autistic adults, those who were bullies during childhood carry their ways on through to adulthood and one bully can affect many people. They do a great deal of damage and adult bullies become very good at hiding their attacks, often presenting either as a perfectly charming individual or even portraying themselves as a victim themselves to gaslight their victim and observers.

Being out as an Autistic person makes me open and it makes me a target. I think this is something that we as advocates don’t talk about enough.

During my years as an advocate, I have become very mindful of the fact that there are different types of bullying and have seen it playing out in too many environments. It has become ingrained into our society and I am not immune.

I was bullied as a child, so I know the long-term impact this has on an individual. Since becoming an advocate I have had a couple of bullies who lurk in the shadows waiting for when I am at a low ebb to have another stab with their knifes ,usually in the back may I add.

One thing I am always very mindful of is that there are two sides to every story and those who are so quick to throw stones often live in glasses houses. I am the type of person who collects all the stones that people have thrown at me to build a protective wall because I have learnt all about bullying. I use that knowledge to protect myself now, but it shouldn’t have to be like this.

Grown up bullies use covert methods as bullying often becomes more strategic in adult bullies (think of corporate bullying and competitor bashing). Often there is an ulterior motive especially in employment settings, business, and not forgetting the world of social media which is a subject all of its own.

I am seeing so many of my friends and colleagues having to deal with bullies and witch hunts across social media that I have absolutely no motivation to reach out to anyone on these platforms other than those I trust. I haven’t been attacked directly yet, but some close to me have and I know it will only be a matter of time. I won’t even go onto Twitter because in my opinion it has become the modern-day version of the stocks. One thing I have noticed is those who criticise tend to do it late at night when the person receiving the criticism is either asleep or, when awake, in a less resilient frame of mind so are less likely to challenge the perpetrator.

For a long time, I let other people’s negativity, bitterness and narrow-minded perceptions stop me from sharing my views and using my voice. I would let the things people said really get to me and would spend days worrying about how people perceived me.

I have removed a lot of people recently from social media as I have constantly had people trying to draw me into their arguments and group attacks. That really does not work with my mindset. People who know me will understand why I need to protect my own health and well-being and will actually make the time to engage in discussion rather than just lurking around for when they want to throw in negative jibs. I have a really strong scaffold of people around me but over the last few months I have definitely pulled away from more and more platforms which are become toxic an inhabited by trolls.

Our whole lives do not need to be shared on social media for us to be active citizens and advocates. There is a big difference between giving up your time to bring about systemic change and spending your whole life attacking and criticising on social media, just because another person’s experiences don’t fit into your narrow experience.

I find it especially distressing during this time that people feel they have a right to criticise and condemn without even checking their facts first. So many people are dealing with challenges created by COVID-19. We don’t know what anyone is having to deal with behind closed doors, and all this nastiness and underhand bullying is just adding to the stress levels.

It’s really not clever eating your own, especially when you only have half facts and hearsay to base your defamation campaigns on. The pandemic has already divided communities and that is the last thing we need. We can’t allow  our social structures and support systems to break down because it lessens our voice.

Those who are buying into this mindset of ganging up on others are not helping anyone. While people are fighting amongst themselves, they are not focusing on the good of society or the future issues that we are going to have to deal with. I refuse to interact anymore with people who are purely  focusing on their own personal vendettas.

We all have a choice of paths we take in life and I choose the one that leads to compassion and empathy, not criticism and condemnation.

Focus Group – Education – Autistics and Allies

A discussion about being Autistic and education including what inclusive means to you, and changes needed in the system.

  • What does inclusive education mean to you?
  • What has been your best experience with education?
  • What has been your worst experience with education?
  • What would you like to see change about the system?
  • What would you keep the same?

Focus Group – Education – Autistics Only

A discussion about being Autistic and education including what inclusive means to you, and changes needed in the system.

  • What does inclusive education mean to you?
  • What has been your best experience with education?
  • What has been your worst experience with education?
  • What would you like to see change about the system?
  • What would you keep the same?

Announcement regarding the Oliver McGowan Mandatory Training in Learning Disability and Autism for Health and Social Care Workers Strategic Oversight Group

Following on from the announcement of the delivery partners in July of this year of the Oliver McGowan Mandatory Training in Learning Disability and Autism for Health and Social Care Workers, there has been a process by which Autistic representatives were able to apply from the NHS England Learning Disability and Autism Advisory Group to join the Strategic Oversight Group led by Skills for Care, Health Education England, and the National Development Team for Inclusion. 

After an application and interview process, Autistic UK is proud to announce that one of our Directors, Julian Morgan, as a member of the NHS England Learning Disability and Autism Advisory Group and the NHS Citizen’s Advisory Group, was appointed as one of two independent Autistic members of the Strategic Oversight Group.

Visit the website here

Julian will be attending his first meeting of the Strategic Oversight Group at the end of October, and is looking forward to being able to put our wider Autistic community’s views and concerns forward to those responsible for its implementation and evaluation. 

To this end, Autistic UK will be continuing its focus groups and surveys so that Julian is fully informed and up to date with the wider Autistic community’s wishes and concerns. Through this we hope to ensure that your voices are heard directly by those who need to hear them. Our next survey will be shared across our platforms in the next few days, with the questions being based on the answers received in our initial survey. The report generated from our initial survey has been passed on to the Implementation and Evaluation Partners via NHS England.

As one of Autistic UK’s founding principles is that we do not seek to speak for Autistic people but provide a platform for their voices to be heard, we encourage all of you who read this to grasp this opportunity to have your views put before those decision makers responsible for the creation, implementation and evaluation of the Oliver McGowan Mandatory Training in Learning Disability and Autism for Health and Social Care Workers. In turn, we will also use the discussion points from the Strategic Oversight Group meetings to inform our future survey questions. In particular we are seeking answers from those whose voices are normally not heard, especially those of you who also have a learning disability and those with high support needs.

We will also be putting out surveys which focus on intersectionality, for example, LGBTQIA+ and Black and other Ethnic Minority communities. This is to ensure that health and social care inequalities faced by those further marginalised groups are specifically highlighted, and that feedback isn’t based on one subsection of the Autistic community.

This will also include input from the official partners regarding the areas which they would like to consult with you on, which should give our community an idea of their understanding and focus. These will always be put out separately and be clearly identified as questions being asked by those organisations. Please be assured that all of your answers to these questions will be passed on anonymously, but word for word.

As ever, the results of all of these surveys will be published on our platforms as soon as they are available.

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.