It was some time ago that I heard of the concept of PIP (Personal Independence Payment). My understanding is that it replaced DLA (Disability Living Allowance) and that it was necessary to secure it to reduce pressure in terms of having to find a job with the hurdles I had to jump over in order to get and succeed in a professional environment.
My name is Rhys Jenkins and I’m 25 years old. I have a law degree from Cardiff University and an MSc in Autism and related conditions from Swansea University. I was diagnosed with semantic pragmatic disorder at the age of 4 which then led to a diagnosis of autism at age 16. I enjoy following rugby and football in my spare time.
Me and my family’s decision to go for PIP led us to undertaking a long and challenging journey that began in Swansea in October of 2016. I had an interview at Capita with a PIP assessor who was a qualified paramedic. The woman asked us a series of questions based on illnesses or difficulties that I’d had in my life.
The process was very hard as the forms we had to fill in prior to the interview involved a lot of discussion over what I couldn’t do rather than what I could do. I found the whole process very difficult in all honesty.
In the meeting we found out that the assessor didn’t even know that autism was a neurological disorder and must have viewed it as a disease as she reportedly said, “I don’t need to know anything about autism, only how it affects you”. I later learned that this statement was very rude and harsh and I felt as though the difficulties this condition causes me were taken for granted.
After a couple of weeks we found that the woman who assessed me had scored me zero on all counts of the PIP assessment, 23 points being required to achieve PIP itself. This left me and my family very distressed and we immediately went about submitting a mandatory reconsideration and whilst doing this were preparing ourselves to take it to tribunal if necessary. PIP at this stage was very important, and as such we went about collecting evidence of the difficulties I face in day to day life. In pursuit of this we decided to try and get a diagnosis of dyspraxia from this specialist based in Cambridge in order to show evidence that I have certain difficulties that impede me in every day tasks such as cooking and cleaning. In November of 2016 we saw the specialist and it was clear from the tests she ran that I was indeed dyspraxic. This led to a report and a diagnosis of severe dyspraxia which was confirmed in January of this year.
Having not been given a reply of when the mandatory reconsideration would be returned, my family and I were prepared to take this to a tribunal if necessary. We arranged for a meeting with an AM of Plaidd Cymru called Bethan Jenkins and she was able to offer her support if necessary along with a few other specialists my family had contacted, the names of these specialists sadly I cannot recall.
I have since been pleased to report that the reconsideration from PIP came back this month and I have scored 23 points from the mandatory reconsideration of the report we submitted back in October.
This marks the conclusion of a very personal and arduous journey for both my family and I. It now means we can build towards a better future for me. PIP is a difficult process. The reason for applying was because it was a way in which I didn’t have to accept a job that I just was not ready for. I’m happy and pleased to say the future is looking bright at this current moment and I’d like to take this opportunity to thank my family for the love and support which has been vital for my life being where it is right now.
Rhys Jenkins, 2017
“I (28 yr old) do volunteer work and I’m currently pursuing my master studies regarding Lifespan Psychology. I live in the south of the Netherlands (with my rodents) and have a boyfriend (but we don’t live together). I am vegan.”
My autism expedition
After ten years in therapy for various psychological problems I hadn’t achieved much progress. Therefore, I started experimental therapy for obsessive compulsive disorder (OCD). However, this therapy didn’t work. My psychologist suggested that I was autistic because my OCD looked so different from the OCD of his other clients. I thought about this a lot. I’ve always felt different from other people and have felt immensely lonely.
A few years before the experimental therapy started, I’ve had the suspicion of having Asperger’s syndrome. My psychiatrist at the time, who I only saw when I needed medicine, flapped this suspicion away, because I didn’t exhibit the classical “hand flapping” behavior associated with Asperger’s. What a shame he only asked about stereotypical characteristics (of boys with autism).
I didn’t exactly recognize myself in “textbook” OCD. I did not have any specific OCD, but my obsessions and compulsions manifested in almost every area of life, for example, in my relation to food. There was usually no strong fear of specific things, but mostly general restlessness, perfectionism and performance anxiety. In addition, OCD was functional for me; it gave guidance in the form of rules to the boundlessness of the inner and outer world and it helped me through the day because I felt no motivation and energy to function properly.
Furthermore, I couldn’t relate other complaints I had, like being very sensitive, or my cognitive and social problems, to my OCD. Nor to my obsessive compulsive personality disorder (OCPD) and mood disorder (dysthymia) either. Many symptoms were recognizable, but I could also relate to other diagnoses such as AD(H)D, borderline and bipolar disorder. Diagnosis had fallen short until now because there was something missing.
Who was I, moreover, besides my symptoms? Why did I became such a chameleon who coloured to the surroundings; too afraid to be myself?
When I was in therapy with other people with OCD, I copied them. When I stayed in a clinic for personality disorders, I ‘became’ a personality disorder. Wasn’t I at this clinic to explore and strengthen my own identity? Did this exploring and strengthening not happen because the treatment was focused on symptoms and not on the core of my problems?
I searched the internet, read books and talked about autism, because maybe it was the missing link. I looked at myself from another perspective and discovered more and more autistic characteristics. I had just learned to compensate and camouflage to be included as ‘normal’. It was my main goal to be liked and that wasn’t only linked to the stage of adolescence. After my autism expedition many pieces of the puzzle fell into place.
It was as if I recognized the true me for the first time.
From the outside you can’t see I’m autistic, so people around me were sceptical. That made me insecure, but I saw no advantage in attributing things to myself that I didn’t have. It’s not like being autistic is something to strive for. I tried to be critical of myself too, because I wanted to be sure, although being sure is always difficult in psychiatry.
I started looking for professionals with up-to-date knowledge about autism in females with normal intelligence, and found a psychology practice where I could be carefully examined. After many questionnaires, tests and interviews with me, my mother and my coach, I got the result, “you have an autism spectrum disorder (ASD). PDD-NOS to be exact.” I was relieved.
Although I will have to deal with the constraints of autism all my life, there is place for hope and perspective. I don’t see autism as a disease, because it is not curable.
People with autism are a minority who have a different way of processing information. For me, autism is a way of being and not something you ‘do’. That realization removes the pressure of constantly having to adapt to society’s norm, which makes me feel exhausted.
The way in which I’m autistic is still a search process, but I already have a better understanding of my limitations. I am sensitive to stimuli, such as sound, so I cannot be outside my own home for too long. I’m struggling to get from theory to practice, so I first have to make plans to get an overview of what needs to be done. I like to socialize, but I find it tiring and difficult. Unexpected things give me anxiety and stress. I often think about life instead of living life itself. It takes a long time to switch between different places or activities. Taking initiative is difficult. There are other recurring challenges, which means that doing everyday things takes longer and costs more energy.
I can give meaning to all kinds of problems in my life with knowledge of autism. The next step is to accept, have faith, learn to deal with problems, but mainly develop what I’m good at.
The diagnosis will gradually get a place in my life, with professional therapy. Now the core of my problem is clear, so therapy has a higher chance of making my life more pleasant. I don’t constantly have to explain and defend myself anymore, because I feel recognized by my therapists.
I want to do something for others with autism, so my own diagnosis has given me a new target in life. I blog about pieces of my life and write poems to show how autism feels from the inside. It would also be nice to give guest lectures or have a say in policy. I hope that autism will be better recognized, so that additional mental problems can be better prevented.
Moreover, I hope for a society in which differences are more accepted.
Since being diagnosed with autism in my mid-thirties, I’ve been re-thinking a lot of things. I’ve spent a lifetime of trying to appear to be the same as everyone else. I’ve been watching. I’ve been studying. Every book, article, overheard conversation, brings me that little bit closer to passing for normal.
I’ve spent a long time thinking about who I ought to be.
And I thought you were all doing it too. Maybe not everyone. Maybe a few of you were in on the secret, but I assumed, as we all do, that the way I see the world is the way everyone does. Now I know that when I don’t understand you, it’s not that I’ve missed out the rules of the game, it’s that you’re playing Monopoly whilst I’m playing Rugby Union. It’s not that I’m coming at it from the wrong angle, it’s that I don’t have the… Whatever-it-is to understand you. I don’t get it. I can’t.
And that’s ok.
That’s what I’m coming to terms with. It’s ok. It’s ok that I don’t want to make small talk, and it’s ok that you do. There will be times when I will. I hope there will be times when you won’t.
Perhaps the biggest change having a diagnosis has meant is that I now know that my life-experience is genuine.
Having my autistic brain raised as a neurotypical one meant that I was constantly being told that the way I experienced the world wasn’t true. When I was told I was being silly for complaining about the name-labels sown into my clothing, I learnt not to complain. I learnt how to quietly cut them away. I learnt that the sensation that took over everything, that scritching, like a feather of needles against the back of my neck, wasn’t real. That I was overreacting. When I was told I was lazy when I was exhausted by another day’s consciously processing, I learnt that even though I was working so hard to be a person, I was still failing.
When we were running late for something, and everyone else happily said, “Nevermind”, but my anxiety went through the roof as I rocked quietly in the back of the car, desperate for no one to notice that I couldn’t process the difference between the reality in my head and the reality that existed in the real world, I learnt that I was weak and overreacted to everyday things.
When I would lie beneath trees, happily tracing the patterns of the movement of the branches for hours, caught in a hypnotic moment, I knew that was strange.
When I couldn’t understand why people saw me as arrogant and aloof, when I was really scared and wanting to reach out, I knew that I was getting something wrong.
When I’d hide in the cloakrooms at school to read, and someone would tell me I was brave to be so visibly bookish, and I didn’t understand what they meant, because all I was doing was desperately trying to calm down the noise in my head, I knew I couldn’t predict what the world thought about me.
When I believed without question any obviously outrageous lies, when other people knew to question them. I knew that I was gullible.
When a friend told me that I was always such an angry child, but I wasn’t angry, I was frightened and frustrated, I felt ashamed.
When I was hugged and it hurt, and I told them, and they laughed and hugged me more, I learned that what I was feeling wasn’t real to other people.
When I struggled with everyday outings, like shopping, and had to focus carefully on whatever I had to hand just to keep putting one foot in front of the other, I knew I was different.
When I listened to the same song over and over and over again, because the repeating pattern drowned out the sensory information in my head, but my siblings begged me to literally change the record, I realised that I wasn’t supposed to enjoy the things I enjoyed.
When I had to go to new places alone, and I couldn’t find a building plan or a picture of the place or any detailed instructions, and I knew I would have to rely entirely on building one as I went along, I felt strange. So I touched the walls to feel grounded, and ran my hands over as much as I could without being noticed. I knew other people just coped, and it left me feeling like a failure.
I was trying to be someone else. I was trying to be a neurotypical version of myself. It turns out, I can’t do that. I was judging myself and being judged by the wrong set of instructions. If you only look at the outward behaviour, and you don’t know the root cause for it, you’re always going to get it wrong.
If you punish a child for ignoring you, then you’re treating it as a deliberate act. But if you know that the child is currently unable to process your words because their brain is struggling to deal with a background noise, then you can help remove the barrier to processing, and find a way to communicate that you can both understand. For me, finding out I’m autistic has been a liberation. It hasn’t changed any of my difficulties, but it’s helped me finally accept my own motivations. It’s helped me see that my lived experience is as valid as everyone else’s.
With that knowledge I can start looking at the causes behind the things I find hard, instead of judging myself for my reactions to those problems. It’s helped me build real coping mechanisms, instead of trying to pretend that the problems don’t exist.
I don’t want a sanitised, socially acceptable me anymore. I want to be the me that I am. The me that I have always been.
Because I am socially acceptable. I might be a bit peculiar if I let it all hang out, I might seem a bit less self-assured and a bit more terrified, but that’s ok, isn’t it? Other people get to break those rules? I may not be good at breaking rules, but maybe I can add new ones, a few sub-clauses here and there.
It’s what I’m striving for.
Awareness is important, it’s the first step, but the true challenge is acceptance.
‘The Challenges of autism and a late diagnosis’
From a very young age, I was acutely aware that I was very different from other people, particularly my own peers. So, too, were many people around me, including peers, family members and teachers. Trouble was, nobody really had a clue why. When I stared school in 1987, very little was known about autism, and much less still about Asperger Syndrome, a condition with which, almost three decades later, I would be diagnosed. And, as I was high-functioning, and flew academically, nobody thought to do anything about it.
I was merely just another bright, if slightly eccentric, kid. Of course, I stuck out among the other kids as a bit of an eccentric loner, and was, therefore, a natural target for bullying.
As a result, I developed extreme insularity and a profound sense of the correctness of my own thoughts and opinions. It was almost me against the world, after a fashion. Of course, all this led to extremely profound depression, and even multiple suicide attempts. The issues started to recede a little when I embarked upon my A-Levels, and things progressively got better. Although still socially awkward in the extreme, particularly outside of school hours, I at least felt as though I fitted in at long last. After all, I was among people who shared similar hopes, aspirations and goals to my own.
Come September 2001, I got into university by the skin of my teeth, and threw myself into my studies with gusto. This was where I belonged; I was on the road to doing what had always been expected of me and, as I saw it, obtaining a one-way ticket to job prospects, life-long financial security and worthwhile employment which, in turn, would give my existence some worth.
With hindsight, of course, I can now see that the sheer amount of changes that took place within a short space of time completely overwhelmed me. Although I settled quickly (and pretty much seamlessly) into the academic side of things, I was still plagued by the same old social awkwardness; it took several weeks to force my way out of my shell and talk to someone other than my course-mates or flatmates. My life had changed completely in a very short time and I patently couldn’t cope, although I stubbornly refused to acknowledge the fact.
I simply couldn’t understand what the problem was, never mind show the perceived weakness of doing something about it. Was “drop-out” not, after all, a very dirty word, and a synonym for shame and failure? I certainly thought so, and feared the proverbial cold shoulder from my nearest and dearest if I dared to throw in the towel.
Besides, why was I struggling so much anyway? Did I not finally have the freedom I’d always craved? Was I not among peers and equals for almost the first time in my life? Was I not amongst people who did not know the troubles I’d gone through, and would not have cared if they had; to whom, indeed, I was a blank slate? Did I not have “a life” for a change? Was this not a chance to completely erase the past, something I had longed for? New town; new, nourishing environment; new friends and peers; new chances for interests and relationships – should all these not make me happy?
All this said, my four years at University were the only time in my life that I was truly happy and contented in my being. Indeed, my only source of sadness during the entire period was my falling hopelessly in love with one of my female course-mates, and yet being unable to express my feelings thanks to an extreme and emotionally-crippling inferiority complex (completely of my own conception). The same sort of issue had wrecked my chances of having a romantic life throughout my teens. The new chapter didn’t go on for very long after graduation. Like many graduates, I took menial employment; saving money to go travelling; to visit the relations in Australia who’d been badgering me for years. Things seemed to fall apart during the time I was in Australia, culminating with the death of my beloved grandfather back home in Wales three months into my trip. I was duty-bound to return home for the funeral of the man who’d been a driving force in my life. However, I was unable to grieve properly, feeling I had to be strong for the sake of my cousins, who he’d more-or-less brought up. Even though these events are now long past, I have only recently been able to grieve properly. To cut a long ramble short, my life after returning from Australia seemed to lurch from one crisis to another, with the brief respite of six months working overseas in 2008/9. For much of this time, I’ve been unemployed and on various benefits (not a good thing for mental health in itself) and, when I was in work in the UK, I was totally depressed by the banal nature of the jobs I was doing, and how people perceived and treated me due to the nature of those jobs. I hated the fact that people seemed to be surprised, sometimes even shocked, when they discovered that I was highly intelligent and potentially interesting, simply because they expected someone in those types of employment to be “thick as a plank and dull as ditchwater”.
While I was out of work, even my relationships with my nearest and dearest deteriorated, sometimes almost to the point of no return (so it seemed). Tension was caused by the fact that my parents were struggling financially, and could have done with me contributing to household expenses. I couldn’t bear the idea of entering another menial job in which I would be completely undervalued and demeaned as I had been in previous jobs. As far as I was concerned, the only thing that could give my existence meaning was a job where I would be a valued and worthwhile member of the workforce. Was a person not, after all, defined by their qualifications and what they did for a living above almost all else? Was one’s line of work not, after all, the third thing any new acquaintance always enquired about (after name and geographical origin) and, therefore, the third most important thing about an individual? Therefore, what was the point of having a job that one would be embarrassed to admit to, in light of one’s level of education?
A chink of light arrived towards the end of 2012, when I finally sought medical treatment for my depression, following several recent suicide attempts. My parents also discussed my situation with a friend of a friend, who has experience of counselling people with Asperger Syndrome, who suggested that I might have the condition. This having also been suggested by a couple of other people, I decided to join a local support group to find out more.
It was a real “alleluia moment”; I obtained several books on the condition and reading them was like tearing pages from my life story. I could not have been more convinced that I have the condition and, what’s more, it’s the cause of so many of the differences that both caused me to be bullied and lay at the root of most of my mental health issues.
What is more, many of the “odd” behavioural traits and “eccentricities” I developed during my boyhood I am now able to acknowledge as strategies for coping with an undiagnosed condition of which I knew nothing.
Having now received a diagnosis, I am now a lot more comfortable in my own skin than I was at any other time in my existence. At last, I’m progressing towards some sort of inner peace. I still have moments when I cannot cope, particularly when high emotional impact is concerned – one recent case of bereavement, for example, left me near-inconsolable for 48 hours solid. But, I now understand why I have such extreme reactions to things sometimes and, as time goes on, I’m sure I’ll learn to cope ever better. Where work is concerned, having been involved for some time with an educational charity, I am now pretty convinced that my future lies in teaching, for which profession I intend to enter training imminently. So, after many a false start, I seem to be getting somewhere at last.
Having a diagnosis has also led to my meeting many inspirational people with autism and related conditions, who are the living proof of what those on the spectrum can achieve. Amongst these, I number the founders of InAwe firmly within the top five. I feel greatly encouraged by their example, and they and others will continue to be an inspiration to me, and to many another who faces similar challenges.
2016, Ben Fielding
Aeroplanes, pigeons and poo!
There are times that you feel the world is out to challenge you, piling challenge upon challenge. Some challenges are quite ok and help with your development. Others feel as if the world wants to remind you that your functioning is ever so slightly different to what the world considers to be the norm.
I will now explain the reason for these thoughts. Since March this year I now also work in the UK as I started up InAwe. As a result I have had to develop my planning and organisational skills at an increased rate seeing that the workload has increased tenfold.
Challenge number one!
As I travel a great deal this also means having to arrange things such as flights and places to stay. My income does not yet enable me to make use of hotel accommodation so I have to rely on the hospitality and kindness of my friends. I am very lucky to have three friends which I can ask. Of course I will try not to ask the same person twice in a row in order to not take advantage.
Last august I had to travel to the UK again so in July I asked a friend if I could use her place as a base for a few days. Everything was nicely arrange, at least so I thought!
As we both have very busy schedules we had no real communication since my email request and my departure. I arrived well in time at Schiphol airport and in the departure lounge I thought of sending her a message to let her know roughly what time I would be arriving at her house.
The answer to my message; ‘what do you mean by `I´ll see you at 17.00hrs?’
My heart rate increased. I immediately had the feeling that something had gone wrong. Within a few seconds my mood changed from ‘happy but tired ’to ‘tearful and deflated’. Eventually we managed to figure out that I had put the correct date in the email but for the month of July instead of August!
This would normally not have mattered too much but that week in particular my friend had a great deal of catching up to do for her studies.
I have never felt so ashamed and felt like walking away from the airport and returning home to my dog. I can’t tell you how much I missed her doggy support at that moment! It feels as if your heart is actually physically hurting. And no, I could not stop myself from crying, so I ended up in the airport restroom trying to cry quietly so that nobody would hear me. What I do find rather comical is that despite being overcome with emotion I was already emailing another friend asking her if I could stay with her. A problem solving brain is extremely handy in those moments…
I was lucky enough to find accommodation with one of my oldest friends that I’d known since childhood. In retrospect this worked out really well as we were able to spend some time together and this was something that had not happened for quite a while. It was lovely to catch up and experience her life.
So that was the start to my working journey, how great was that..!?
I realised that I was pretty exhausted and made the decision to escape for two days. As this coincided with the weekend it was also good for my friend and her family.
I had two options; to go to a place totally new for me or as an alternative head for Pembrokeshire where I had often been before. Another major decision to make! Major in the sense that it would be the first time I would go somewhere on my own which was not work related. Bearing in mind the experience I had at the start of my journey I decided to play it safe and head for Tenby and St. David’s; places I knew well.
With the help of my friend I booked a hotel online and departed feeling confident that this would be good for me. However, when I arrived at the hotel in Tenby I was confronted with the most uninviting room I had ever seen. So; challenge number two!
A room with a window they had attempted to patch up with sealant but that still provided quite a draught. Then the bed… a mattress with a bulge so large you would not believe it and on top of that an internal bathroom with a bath but without a shower! This was totally new to me. A room with shower is standard but if you want one with a bath you normally have to book or ask for this as that normally does not come standard! The owner tried to convince me that it was the norm and that you had to specially request a shower. Anyone who knows me can imagine my polite frustration at someone being so blatantly idiotic! Needless to say, he did NOT convince me!
I was at my wits end and contacted my friend for advice. She is very to the point (which I love about her) and confirmed that this was not normal, advising me to insist on a different room.
In the meantime I did visit the beach and went for a walk around the village. I had also bought cleaning tissues as I did not trust the hygiene procedures of the hotel after seeing the state of the room. I had decided that the third challenge of my journey would be to go to a restaurant by myself. It would have been easy to buy something and eat it whilst going for a walk but I wanted to conquer a fear so I choose the restaurant. Eating alone also has a sort of taboo associated with it which can be hard to ignore.
My advice if you ever want to go out for a meal by yourself is to take a book with you. It certainly is different if you sit with other people as with the conversation you have the meal will last longer. I had finished my two courses in 35 minutes. It took a lot of getting used to and to be honest I should do this again to get some practice but it certainly was a freeing experience! I felt so proud of myself and left there with a sense of achievement. Anyone who has not eaten in a restaurant alone, try it out and you will understand where I am coming from.
During my walk through the village I had seen a lovely ice cream parlour and had already decided that that was going to be my dessert. Now for the hilarious part of the story… I walked towards the harbour because the views there are beautiful. Sitting on a bench with a lovely ice cream, watching the sun set over the water…what more could you want?
Then, out of the blue my arm was pushed from behind and I felt feathers brushing my face. I looked at my hand and saw that I now only had part of the ice cream cone left…and a huge seagull was flying off into the distance with my ice-cream dangling from its mouth!
I had the shock of my life and the people around me were all astonished to see this happen.
Challenge number four; how to deal with this? Laughing nervously I walked away and saw a nice little bench under a tree which also had a view on the harbour. Perfect! Enjoying the view with a good book, things could not get any worse now that I had been ‘attacked’ by a Tenby seagull!
This was not to be. At the end of the day the most unimaginable thing happened. I took a photo for my @InAweUK twitter feed using our businesscard as a joke and tried to relax. Above my head I heard the quiet sound of a pigeon. How lovely I thought. Then I felt something wet hit my head.
Would you believe it…the lovely pigeon had decided to help my day finish off with a bang. Why had I thought that the day could not get any worse! Now think back to my room without a shower! Luckily enough I had the cleaning tissues I had bought earlier which now came in quite handy. Meant to be as I always say. The owners allowed me to use their bathroom, a lovely gesture but that soon became challenge number five! The idea of using a stranger’s bathroom is ‘strange’ enough.
Not having a choice due to the pigeon just added insult to injury.
After the worst night of sleep I had ever experienced I decided to travel on and find a different hotel. Not throwing the towel in and heading for home, as was my first instinct! I had faith that it could not get any worse than it was and I had already spent the time travelling down to Tenby so I might as well make a second attempt.
I asked for help from the locals in St.Davids and was proven that asking for help can lead to wonderful meetings. The two days happily ended finding a lovely bed and breakfast which had the perfect bed, meeting lovely people in a pub (to my great surprise also a Dutch couple) and listening to a Welsh Male Choir in St.Davids Cathedral. Going to a concert in the Cathedral had been on my ‘bucket list’ so this was the icing on the cake and rounded off the dodgy weekend in a brilliant way. This is proof that I must not give up when challenges cross my path and that there is no shame in asking for help when you really can’t find a solution yourself. Oh, and do not eat ice cream near the Tenby harbour and certainly avoid sitting under trees!
p.s. just to round off the story, how it actually ended was me driving back along the coast, leaving my window open, screaming when a massive bumblebee flew in through said window and landed in my lap and me trying to not to drive into the hedgerow, talking to the bumblebee and asking it not to sting me in fear whilst pulling into a petrol station. I nearly fell out of the car in my panic, realised the poor bee was clinging onto my leg for dear life and jumping around like a lunatic to dislodge it. A man in a Landrover must have had the most entertaining minute of his life, watching me hopping about like a loon. A journey that I will never forget!
This is one of the Dutch projects that I work on as a consultant and how we are bringing the vision of InAwe into other countries. This project has inspired me, challenged me, tired me and given me hope that the involvement of people with autism can be seen as an essential part of the development process when looking at health/education services based on inclusion. I am linked to the education side of the project and help connect people with autism and their families from the local communities to local authorities. I have learnt so many new skills and see my development moving forward in many areas’! Exciting times!
“In my lectures I always emphasize that one should not have preconceived ideas about autism; ask the people themselves. But recently I found I had fallen in the same trap!! My dog Kaya normally accompanies me everywhere. I often go to the office of my mentor, Dr.Martine Delfos which is located in an office block where no dogs are allowed. As a result I have had to do quite a bit of manoeuvring to arrange for dog sitters and travelling became increasingly more stressful. My sister then said to me, “Have you actually ever asked the building supervisor yourself”? I picked up the phone and within two minutes the problem was solved! Once again I had learned a lesson.
The day I was diagnosed with Asperger’s, six years ago, was one of the best days of my life.
Making eye contact was a huge effort, but is that not the case for everyone? And social interaction – surely that’s very tiring for everybody? Not so, it was only then that I discovered that. Social contacts have over the past few years become less stressful. I have many people around me and my friendships are stronger and deeper than ever. I also have my dog Kaya, who always goes wherever I go. She has also made my life a little easier. I give lectures on autism throughout the country and the train journeys in particular are very tiring. They cost much more energy than the actual lecture. All impressions hit me with equal intensity. I have to actively concentrate in order not to think about it. But in the end it is not possible to cancel it out and the noise always remains in the background. By focusing on Kaya, travelling becomes lot less stressful. I cannot ignore her. She keeps asking for attention by moving her paw over my face or jumping on my lap.
Because I’m so aware of everything going on around me things very quickly can get on top of me. If then something unexpected happens, I am lost for a minute. For example, yesterday I was on my way to an important appointment, when I got off the bus my GPS had stopped working. After walking in the wrong direction for five minutes I had a mental black out. Another person would have approached someone and asked for directions, but this simply did not occur to me.
The stress I experienced created a mental block.
When this happens I can get frustrated, but I can also laugh at myself: look at me in my predicament! Awkward moments remain, but I always try to see the humorous side in any situation – also in my lectures, otherwise the burden becomes too great.”
Finally Tuesday the 10th of March 2015 had arrived. InAwe was actually going to be officially launched and I could share my excitement with everyone.
It was a great turnout with many people from various organisations for whom I had worked with in the past.
Andy Graham from Autism Guernsey took time out of his busy schedule to support InAwe. Lynda Morgan from NAS Cardiff & Vale kindly helped make sure that everyone had a slice of cake and was feeling comfortable. Representatives from Cowbridge Comprehensive came to see what InAwe was all about and Paul Murphy from Halcyon Training Foundation showed his support.
The event was opened by The Mayor of the Vale of Glamorgan, Cllr Howard Hamilton, who is a supporter of young people who start up their own enterprises.
It meant a lot to me that Cllr Lis Burnett and Natasha Davies from Creative Rural Communities both took time out of their schedules to come to the launch.
Natasha had been vital in helping me apply for and win a start-up bursary from the Inspire the Vale Bursary Fund and Cllr Burnett was one of the panel members on that nerve racking day.
A beautiful cake was made by the talented Faye Anthony from Fancies & Flowers in Porthcawl.
The day was a great success with over 60 people supporting InAwe on the day. The realisation dawned on me the day after that this was just the start of all of the hard work needed to make InAwe the success that everyone wants it to be. Frightening but exciting all at the same time!
So this was how it all started. March 23rd 2014…..little was I to know that this would be as an important moment as it turned out to become. I remember listening to the other speakers and knowing that I wanted to find a way in which I could work more in the UK now that I was living in The Netherlands. The depth of their experiences left me in awe of how they had had found their own ways in which to grow and fight for their dreams. And so the concept of InAwe started to develop further.
I only found out a year later that one of the speakers had sat outside for half of my lecture as they had not wanted to disturb me with their arrival.
That, to me, embodies the people that I meet in my journeys, filled with empathy and thoughts for the other person.
The circle was complete when I was invited back to ASDES for their second large yearly event earlier this year.