Question Time!

Disability discussions….

So many questions, so little time…

I thought the section on disability within the BBC program ‘Question Time’ last night was great. If you haven’t seen it, I’d have a look, you can catch it on the good ole’ BBC iPlayer.

The comedian Rosie Jones had a brilliant message, and was an amazing advocate for those, like her, with cerebal palsy, and all other disabilities. We need people who have lived with hidden and non-hidden disabilities to speak out, both those that have the ear of the country, and also for those who speak to their community, their local circle or even just their family and friends.

Rosie Jones

I have often felt that I have the passion and experience to speak out for those with neurodiverse brains, but it can be a challenge to change preconceived ideas and mindsets in a 5 minute conversation (especially when you aren’t a neuroscientist or psychotherapist and struggle with recall!)

I think all you can do is your best, where you are, with who you are!

Employment was one of the big issue Rosie addressed, and I feel really strongly about this subject.

I have a Masters degree in music, and was forging that career despite my personal challenges (before this I had been job to job struggling). However, since my diagnosis and the global pandemic, I have lost this work and feel unable to find a job in the ‘real world’ that suits my need for constant breaks, changes on pace and subject (as boredom strikes), a specific environmental set up, some social time but also time alone etc.

In fact, pre-diagnosis, I have consistently been in jobs well below my ability or creative interest, which have left me bored and unsatisfied. They have also been just about or not at all manageable on and off in terms of my conditions.

I was in and out of work with lots of sickness absence, both mentally and physically and sometime thrived, sometimes appeared like an 8 year old, which confused everyone, and especially me! Social issues took all my energy, which of course were constant, with ASD.

Consistency was a major problem; ambition and intelligence but unknown neurodiversity made for a perfectly frustrating and depressing storm. It left me feeling incapable, wasted and hopeless.

The statistics for those unemployed with disabilities is absolutely appalling. Like Rosie referred to, the disabled have so much to give but it costs a little more time and money than those without, and this is part of the issue. Businesses aren’t willing to spend.

I have found a lot of people telling me that the awareness and rhetoric in businesses and society around neurodiversity and disability is improving. That’s great. But I don’t see the change on the ground.

Some companies, such as Google, deliberately hire those with ASD, as they value the aspects of positive traits that come with the condition, that are so well suited to the type of work they do. That’s great.

But not everyone is a “typical” neurodiverse (what some in society typically think it looks like). Even the view of neurodiversity can sometimes feel like its shaping into a new box for people to have to fit into e.g. super bright computer geek with a hyperfocus in one area.

What about all the other companies and other skills? What about those who have a thousand interests in a thousand different things and having their hand in lots of pies suits them? What about businesses in my street that I actually apply for? What about the thousands of applicants all vying for the same job – a job that requires “basics” such as being a good team player, flexible and quick thinking, for which I am none. When there are already a thousand people applying for one job, who is going to pick the person who has the potential to become one of the best at their job but would need extra time, support and understanding to help get them there?

But you and I have so much to give. I am creative, I think outside of the box, I have good ideas, I am a good speaker and writer despite my challenges with dyslexia and dyspraxia (it takes me longer and I have to check everything much more). Where is our place? I feel like I am bursting with potential that has sat inside of me for so long, and I KNOW many others with disabilities feel the same. We just need a leg up to get us to the same starting place as others. That’s all we need.

I don’t know how to fix this for me and everyone else. It will take a societal shift, but also the acceptance that if people donโ€™t experience these challenges, with the best will in the world, it is just really really hard to fully appreciate how it feels. That is why we need advocates, and people who experience these things who will speak out, and work with society for a better space for those with a disability.

I both hate and appreciate the word disability. It feels derogatory and defeatist, and marginalises people. It also helps identify those that need extra support in certain areas.

We need to have a great understanding, reflection and acceptance of peoples’ real and major challenges living with these conditions, and I think that is the aim of the word.

But sometimes, it just marginalises people and makes them feel like a different species. We are all human, with different challenges, abilities and personalities. Yes, we need to highlight and acknowledge these MASSIVE differences that can make life so hard in certain areas for some people, including myself. On the one hand, my conditions make it really hard to function in the society we live in. One the other hand, brains that cause people to break sociatal norms are a problem because of societal expectations and norms.

I hate to make such definitive statements because with all these things there are often two truths that hang together to form a fair and moderate approach. It is challenging, particularly in written form, to cover all angles of any one subject.

Some societal norms are deeply appropriate and conditions need to be managed around them. However, we have to acknowledge that a literal physiological difference in brain function is not something someone can help or change. Yes conditions can be support, helped and managed but they will never go away, and there needs to be a balance, in which people are helped, supported and understood to be able to function well.

Side note from the program: interestingly Matt Hancock revealed that he is neurodiverse! He states he had dyslexia – he said that he was able to get by because of his maths skills and the help he received when he was finally diagnosed at age 18. Often those who are diagnosed later in life do so because their other skills, and/or their ability to mask their differences, or even the fact that they don’t fully fit into the diagnostic criteria conceal their neurodiversity. Anyway, this is now a new subject for the next blog! See you there ๐Ÿ™‚

Does anyone have an career/unemployment disability/neurodiversity experience? I’d love to hear you stories, questions, challenges, tips and tricks, or just thoughts and ramblings! Comment below!

Just Being Honest…

So…it’s taken me a really long time to write this first “proper” blog. The reasons for this are all totally tied up in my conditions, so I thought it would be really good to begin with being honest about that.

Firstly, being undiagnosed for so long, particularly with the ASD and ADHD, can mean you constantly feel like you are struggling through life, not pleasing people, and not fulfilling your potential. In summary, you can feel like a struggling failure.

When I was in very younger years at school, the set up really suited me. There were short, interactive and engaging sessions, with lots of hands on and play, perfectly suited to the ADHD brain I carried. Teachers were forgiving of fidgety bums, shouting out and the general upset that came with sudden changes or social issues.

But a little older, I became what would be described on every school report I carried home as “easily distracted and a distraction to others”(ADHD), “inflexible and unadaptable” (ASD), and a whole host of other things.

My mum found my old school reports recently. Reading through them, with the knowledge I now have of myself, was a fuzzy mix of interesting, upsetting and enlightening. There was much talk of me being “smart” and with “lots of potential” but that I needed to “focus” and “adapt” and give more “care and attention” with less “painstaking perfectionism” in order for my grades to reflect this.

So, really throughout my whole life, the feeling of not quite being enough has lingered. I will delve into these subjects some more but what I really wanted to say is to encourage you all to give things a go.

I wasn’t writing my blog, partially due to the struggles that come with focus and attention, particularly for sitting down and writing. But some of the biggest reasons were also because of the following fears:-

– How do I express my emotions into words?

– What do I even feel?

– How do I organise my thoughts so that they aren’t just random and don’t make sense to others?

– How do I write about one subject without veering off into other things?

– What if I expose myself or others too much?

– What if other’s haven’t had my experience and therefore don’t take anything useful from my blabbering?

– What if I offend people?

– What if I get facts about my own conditions wrong?

– Etc


– ETC!!!!!

So, however many months down the line it is, I have decided to just write. Yes it may be a little haphazard, yes it may not fit under perfect little headings, but if I wait until I have presented a perfect format (which by the way would mean not having ADHD or ASD which is an impossible task), then I’ll never do anything.

And you know what, us lot with these conditions have done that for too long.

Discounted ourselves or been discounted by others.

Not fitted in, so therefore thought of as not having value or not as much as others.

Enough is enough.

Now we know what we have, we can decide to utterly love ourselves.

We aren’t faulty misfits, we are beautiful, unusual and colourful human beings with so much to give.

Ok, we can’t always find a space to thrive.

Thats because society is set up primarily for the majority, the neurotypical. But we bring something they don’t have.

Gold is seen as special and valuable because of its rarity. All humans are valuable because of their uniqueness and rarity, but we also hold the key to some things that are not available to others. We don’t think the same. This produces a wild and exciting array of creativity, colour, and clever thinking that some companies are now hunting out specifically.

Nike has always helped me. Yes the sports brand! They say ‘Just Do It.’ And when you’ve felt knocked down, misunderstood, and have given 100% all your life only to feel like it doesn’t get you anywhere, you can end up with the strap line “Overthink And Never Do It.’ But you know what, sometimes not thinking, and being brave and just beginning can be the hardest part (especially for the ADHDers), but just giving it a go and choosing to believe in yourself for a change, may just produce something special. And at the very least, makes you feel good for trying.

So please be brave, for the sake of humanity. We need your unique input in this world. And you need to express yourself in what ever way is good for your soul.

Go for it friend.

(The next blog will be sooner I promise!)

I nearly called this ‘Road Map’ but I’m done with that word and the category of ‘Pandemic’ in general….

Also, how do I get my heading to align in the middle of the page? For all those ADHDers out there – you know I can’t be bothered to find out…although its irritating my Aspergers that it is not central!!!!!!! Can I get a witness Aspies?!

#amen #hadtogooglehowtodohashtagsonamacforthe1000timeasitdoesntstickinmyhead #letsmakethebiggesthashtagintheworld #orthebiggestbiscuit #mmmbiscuits #anyhoo #idigress #adhd

Anyway, this first blog (beyond the intro blog) is one I thought I’d use to try and give (those that need a little guide) a what’s what of what I may be touching on in the coming weeks. As expected, it may look a little jumbled to begin with, I may change topics within a topic, or may not even cover what I’ve said I am going to cover – which again is typical ADHD – but never fear! For the Aspie in you or those with ADHD that need that order to help their 12000 mile a hour brains, I will revisit and keep continuing to attempt to order it so it can be reread with more of a ‘flow’ and structure which I know is helpful to readers. But as Miranda so wisely stated in all challenging situations, “bear with” on that one.

So! Content! Here’s just a few subjects I may be covering – please feel free to comment below with regards to anything on the list that you really would like to hear me waffle on about, or anything that isn’t on the list that you would like to read about.

I found the italic button at last! *holds head in hands*

  • I have received an adult diagnosis – now what?
  • Help or lack of for neurodiversity
  • My medication journey so far
  • Loneliness
  • Meltdowns, shutdowns and overwhelms
  • Relationships
  • The general public!
  • Money
  • Co-morbities
  • ADHD & ASD
  • Risk Taking
  • Eating, Exercise and Disorders
  • Shame, Guilt, Rejection of self
  • Faith
  • A Neurodiverse Woman
  • Creativity
  • Job/Careers
  • Education and learning
  • Clever, competent and co-morbid
  • The Disable label

……and more! As I said in the intro, I am not a trained expert and am generally talking from my own experiences, but will aim to bring in and reference anything I have found helpful from said experts.

Watch this space and don’t forget to add your thoughts or preferences in the comments box below! ๐Ÿ™‚

The Discovery of Neurodiversity in Adulthood

Hi guys!

Thanks so much for joining me on this crazy neurodiverse journey!

I was only very recently (age 35) diagnosed with ADHD, high functioning ASD (Aspergers Syndrome), Dyslexia and Dyspraxia – it was a bit of a shock, a bit of a relief, and the journey since then has gone from feeling happy to know why I’ve struggled all these years, to rejecting my neurodiversity in an ever increasing up and down rollercoaster.

Trying to redefine yourself now and redefine your past from a new perspective and with new information is EXTREMELY challenging. ย As my therapist said to me the other day,

“You are having to grieve the life you had without the knowledge, and life you didn’t have without the knowledge.”

And at 35, that is a fair number of years to have to grieve for.

BUT….there is hope. I want this blog journey for you guys not only to be real and accepting of the major challenges and pain that comes from discovering you are neurodiverse, but also the great hope and light that comes from finally understanding your make up and the beautiful strengths you hold.

My story is just one of many, but I pray that it will help even just one person in one small way, and that definitely makes it worthwhile ๐Ÿ™‚ (plus it is very cathartic for me to write it all down! You should definitely try it!)

We are in this journey together, however unique the journey is, and I think the biggest thing for people working through this neurodiversity stuff is not to feel quite as alone as they have done – it can be a scary and lonely place. You are not alone – however misunderstood you may feel. I realised no one will ever understand me completely, which was awful to think initially, but is freeing in the long run. This is because in fact no one (yes even those that are neurotypical!) will ever be fully understood by another, as even in our (sometimes helpful, sometimes unhelpful) subcategories we are all still so unique. But I think one of the keys to a full and loving life more than anything is acceptance of self. Being your own best friend, and understanding (or sometimes not understanding but accepting) self is the key to a good life.ย 

You will find I apply some of my faith as a Christian, and my humble knowledge of neurodiversity in these posts – please don’t take these as me trying to either convert you or pretend I’m a trained expert. I always believe in proper help from properly trained professionals in this field and couldn’t encourage you more to get the help and support you need. But this may just be a little sideline, a little nugget of gold, to help and encourage you along the way.

So letโ€™s do this! (with a little prayer and a little grace for self, accepting the bad and the good days <3)