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.

Anti-Bullying Week 2020: United Against Bullying

I started writing a piece about how our online community looks after its members and where improvements are desperately needed, saying bullying should be called out at every opportunity. About half way through my third paragraph (bullies using the internet as a shield), when I found I needed to write about something I have never admitted in public before.
 
I have a bully.
 
Our community is blighted in a way rarely spoken of, particularly on social media. This Autistic community is made up (mostly) of vulnerable adults Yet too often, we see these personal attacks and hide to avoid being collateral damage. The bullies only see a self-satisfying, point scoring exercise in cancel culture and one-upmanship; whilst the silent majority remains that way out of fear. We all have enough problems IRL without some troll behind a keyboard doing their damnedest to destroy you, in order to satisfy their own twisted, selfish desires.
 
My bully thinks of themselves as a paragon of virtue, a person to be respected; a self-appointed Crusader who enjoys bullying through selective PMs suggesting inside knowledge, posing as a victim, posting slander, hints of wrongdoing without proof. Most advocates and activists find this this device to be anathema, but it is the mainstay of this bully’s armoury. I make no claim as a paragon of virtue. I’m Autistic. I’m as human as the rest of you, so I’ll not name my bully just yet, but you know who you are. Don’t you?
 
My bully came about when a group I was in tried to discipline them for bad behaviour. I wasn’t involved the second time, but it didn’t matter. With two others, I was targeted. The bully’s emails were accusations of damaging their reputation and engineering their expulsion over the informal warning they received from others. Complaints of how we had done this out of jealousy of their success. This became weeks of personal abuse, accusations and threats, usually many times in a day. They claimed innocence of all wrongdoing,, demanding full retractions of this and past ‘false’ complaints, demanding a public apology from us for suggesting they had behaved badly. The fact we could do nothing didn’t matter to them.
 
Think on that.
 
To prove their innocence, they relentlessly bullied 3 uninvolved persons for weeks, making baseless accusations and repeated, dire threats, to satisfy their Ego. Reminding them their accusations meant we could not deal with their complaint had no effect, those who gave the informal warning were ignored. Finally, we 3 made a bullying complaint and they resigned to avoid exposure. So started an online campaign of innuendo, hints of wrongdoing and insider information with no facts involved. Just constant, malicious gossip.
 
This continues to this day.
 
The effect on my health was stark. Some colleagues helped, some hid and pretended they ‘knew nothing about that’. I had MH problems, I became hyperalert and unable to avoid meltdown, suffered insomnia and inertia with 4 months off work this last year.
 
I’ve had enough of being a Troll’s victim. I thought “publish the emails, drag ‘em into the light”, so they can be exposed, removing their power. Then I thought, unannounced like that would be unkind. perhaps even bullying, so I keep to common decency. Something my bully lacks. Meanwhile, if anyone has ‘learned’ anything about me recently they want clarifying, just ask. I will answer honestly. My bully relies on my silence, which I now break.
 
Dear Bully, you are warned.
 
I’m fed up of being disparaged by this bully. I work bloody hard for our community and don’t get paid very much or often. This work, which mostly happens out of sight of social media, in the NHS and various Strategic Authorities, doesn’t make me special or important. I am only one of thousands who do this month after month across the UK. My work has finally got me to where I can do some lasting good; and the bully is back. For some reason, they need prove they’re ‘better’ than me; little more than Ego with a dash of narcissism. They can’t bear people they dislike having success, so they go about pulling those they perceive as competition down. A bully.
 
This stops now, as I will go public if they continue. I give fair warning. Got that, Bully?
I’m standing up to my bully and suggest others do, too. A bully’s power is nothing when they’re exposed. We all make mistakes. FFS we’re Auties, it’s in the job description! However, no-one deserves to be bullied for them. I prefer collaborative, constructive effort and the internal satisfaction good results brings. I don’t do this work for online celebrity and I certainly don’t do it for the money!
 
So; next time you are offered a PM or asked to join a private group to hear insider information or gossip about someone you may not know or have not met, that the PMer won’t discuss openly or include their victim in the conversation, think:
 
Am I helping a bully?
 

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?