Do you Have A Neurodiverse Difference?
Diagnoses Get A Bad Rep
What Life Was Like For Me
If I had known then what I know now, I would have just assumed that this person had a case of classism mixed with ignorance and intolerance and that she obviously had no understanding at all of what dyslexia actually was. That was over 30 years ago now, at the time I said no more about dyslexia. I finished school with hardly an O' Level (GCSE grade C or above equivalent) and went onto College to try and get a few O' Levels just to prove my teachers wrong. After that I took one dead-end job after another, never understanding why I had the difficulties I had and losing one job after another due to mistakes and other issues I had. My life seemed to be going nowhere!
This teacher's view at the time was quite common, dyslexia wasn't well known and many people viewed it as an excuse for low ability in schooling. Thing is this teacher was wrong! Dyslexia isn't an excuse for thick children, it's an indication that certain children need to learn in different ways. Sitting in a classroom listening to a teacher imparting lessons and looking at 2 Dimensional images works okay for many children. They can interpret, retain and later recall the information learned this way. However, many children do not have strong auditory or 2 Dimensional visual senses, and for these children standardised teaching styles are not enough. They weren't enough for me and I left school with a bunch of CSEs, a qualification designed for the less able student.
By the age of 25, I was unemployed, poor and in the process of having my flat repossessed. Things really were not looking good for me and my mental health was deteriorating. At the time I was told it was depression and I was prescribed antidepressants and sent to see a Counsellor on the NHS.
I found it so difficult to talk about why I felt so down because although I could see that I was depressed about my situation I did not think I had depression, I thought I had 'frustration' because to me my sadness was due to feeling that I was useless. Not only was I only capable of doing manual work, the truth was that I simply wasn't even any good at that. I was clumsy, constantly falling or dropping things so although that led to some funny situations for me while waitressing, it was often not funny for the customers I dropped plates and drinks on! Although I could talk to people with no problem my telesales work didn't go much better because I just kept making mistakes with the paperwork so sometimes the sales I made fell through because I'd messed up the paperwork or had misspelled names or taken down credit card details incorrectly.
After leaving school with no proper qualifications and nearly 10 further years of not finding suitable, fulfilling employment I was left with no self-esteem. I had found time and time again that I couldn't repeat the processes I was shown how to do in induction, it was me who was unable to advance, or even keep most jobs, just like I had failed at school I was now failing in employment. Simply put, I felt like a huge failure and let down to everyone.
What Did My Counsellor Do For Me?
My self-esteem was already so damaged that when I got compliments I dismissed them as coming from someone who obviously didn't know me. I was desperate to find work, I didn't want to lose my flat but no matter how hard I tried I simply couldn't find any work at all. It all came to a head when I lost my temper at the Job Centre. I'd gone for an 'interview', I took with me a folder with over 500 spec letters I'd sent in the past six months to just about every employer within a 10 mile radius. I didn't know how to drive so was limited to public transport and I struggled to get to interviews further than a 10 mile radius. I did still apply for advertised jobs outside of that area but I only sent spec letters locally. Anyway, I went in to the interview expecting to get help but what I actually got a was a jobsworth who told me I needed to try harder. I lost my temper at the Job Centre, I raised my voice at the staff member and swore at him. I then got up, told him he could go to hell and then I just left. Then on the way home I totally broke-down. I was going to get sanctioned, they were going to stop what little money I had coming in and I was already struggling to survive so I did the only thing I could think to do.
I went home and broke just about all my appliances, I kicked the only heater I had down the stairs, I punched my microwave till I broke the glass (and nearly broke my hand) and threw most of my stuff in the bin in a fit of rage. I'd pretty much lost the plot completely, I had no one to turn to and then as the stress levels subsided I started to vomit. I just couldn't take the stress anymore. Fortunately I had an appointment with my Counsellor the next day and after I told him about what I had done he asked me to see the GP about getting signed off. I did that and by the end of 1995 I was in receipt of Incapacity Benefit, something I only ever saw as a temporary measure until I could get myself mentally stable enough to handle people again.
My Counsellor did more than just question my negativity and support my getting signed off, he also encouraged me to go to College. He felt that I needed social contact, I had told him many times that I had no friends who I could turn to, that I had no one I could go and visit, I lived over 250 miles away from my family and I felt totally alone so he told me to enrol in a college course. Didn't matter what the course was, anything to get me out of the house and socialising with people was good enough for him, his only advice was that I go into college and see what they had on offer. As I was signed off most of the courses at the local college were free so what did I have to lose?
Well, that is where my journey into understanding myself started. The subjects I picked seemed really interesting and although they were A' Level standard I had no desire to take the actual qualification, I just wanted to turn up and study them because it was better than sitting at home rocking backwards and forwards hugging my knees.
Finding One Good Teacher
I was accepted at the University of Glamorgan, Wales, It was a good 100 miles away but it was the only place that did the course I actually wanted to study and I couldn't believe it when I got in. I left my flat knowing that it would be repossessed but then I figured that if I couldn't find work where I was I would end up losing it anyway. So in the September of 1996 I took what few belongings I had and moved down to South Wales to start at University.
I struggled through the first year and started to think I had made a huge mistake. This teacher had misplaced her faith in my ability to cope with that level of work, I couldn't even keep up with the reading. So at the end of the first year I went to see Student Services to tell them that I was quitting. I had already lost my flat, I had no where to go, no real employment prospects and now I had a student loan and more debt. I honestly thought it was all over for me, I would be destined to be part of the underclass forever.
What Happened Next Changed My Life Forever!
Was It The Negative Label That Put Me Off?
After Being Diagnosed With Dyslexia
Once I'd learned about how my brain works, once I'd realised that there were as many benefits to being dyslexic as there were difficulties I started to work to my strengths. At last I went from an average C grade student to a B to A grade student, and it didn't stop there. Students were seeing the change in me, not just in the grades but the way I was now keeping on top of my reading and was able to hand my essays in early. Despite getting the extra time in exams I rarely used it so students started coming to me for help with their essays and study skills. By the time I was in my third year I was tutoring other students and after I graduated word got round about my skills and the University asked me back for an interview as they needed an English Specialist for their drop-in centre and my name kept coming up.
I took the job on a part-time basis and was even considering doing a PhD as my Dissertation Supervisor was keen to see me develop my original independent study further but things started to go wrong again.
More Than Just Dyslexia!
I couldn't handle the stress of having to travel to work, I wasn't finding time to cook or clean my house and my stress levels were becoming a major problem again. I wanted to get to the bottom of what was wrong with me so I got myself referred to a psychiatrist hoping to find more answers. Instead of answers I got put back on antidepressants and diagnosed with depression and I was told that I was a sociopath! I really hadn't done a very good job at all of representing myself to the psychiatrist, mainly because I didn't understand what my problems were myself! I left my work at the University of Glamorgan and moved down to the South of England, closer to my mother and sister.
Once I settled there I again got referred to a psychiatrist again, this one didn't think I was a sociopath, he recognised that all the problems I was telling him about seemed related. He identified problems with the following areas:
- Problems with reading and writing often associated with dyslexia
- Problems with balance and coordination
- Problems with my topographic memory (finding my way around)
- Problems with concentration and distractibility
- Problems with managing day-to-day tasks
Thanks to this psychiatrist I was able to start to realise that many of the things I struggled with were actually as easy to overcome with technology as my dyslexia was. Although it didn't help me at all with my balance and coordination difficulties or with my social interaction skills, things like Satellite Navigation systems were becoming easily available and that one piece of technology could enable me to go places and see things that I would have never been able to do on my own without it. He helped me to understand that I might never be able to do things the way other people do but that didn't mean I wouldn't be able to do things.
Life Presented New Opportunities
Everything Was Different - But Nothing Changed
I started to really dislike myself again. I gave myself a really hard time and was becoming a really bad role-model for my daughter as I kept putting myself down again. I honestly felt like I would never get to the bottom of my difficulties and I would never be able to handle working a full-time job. I understood my dyslexic traits and difficulties but they didn't explain my problems with balance and coordination, my problems with social interaction and the other things that kept holding me back in life. It felt like I would never be able to work a fulfilling job and manage my day-to-day chores.
Mary Colley and DANDA - The Light At The End Of The Tunnel
Skip forward about 10 more years to 2010, I had just turned 40 when I found a site on the internet quite by chance that had a graph designed by a lady called Mary Colley. She had founded a charitable organisation called DANDA and the graph was one she had drawn up for discussion. It was on the topic of Neuro-Diversity and it showed lots of different conditions like dyslexia, some I had heard of and some I had not but as I looked at the graph it felt like I had just found the missing jigsaw puzzle that helped to explain the way I worked. Both my difficulties and my strengths were highlighted as neurodiverse traits, but in order to be classed as neurodiverse I needed to have more than one diagnosis so my search to find help started all over again.
When I contacted DANDA in November of 2011, Mary Colley had sadly just passed away and the organisation was trying to find its feet without her. Although they couldn't do much for me at that time, they did give me the details for the Dyscovery Centre in Newport as they have experts there with an excellent understanding of neurodiverse difficulties. In February of 2012 I finally attended the Dyscovery Centre where they assessed me for Dyslexia and DCD/Dyspraxia. After that things slowly started to fit into place. It took me a long time, over two years, to come to terms with my diagnosis and put effective strategies in place. Although my underlying differences are still the same as they have always been, for the first time in my life I am able to work part-time and manage my difficulties!
The Advice I Had Received Over The Years Needed To Be Reconsidered
How Did Getting Each Diagnosis Affect Me?
Not Having A Diagnosis Was Worse!
The Stages To Acceptance
Stage One: Blaming Yourself
Stage Two: Blaming Everyone Else
Stage Three: Accepting Your Part In Creating Consequences
Stage Four: Identifying Triggers And Danger Zones
Stage Five: Putting Effective Strategies In Place
Stage Six: Accepting Your Limitations
I also cannot write by hand, especially if anyone is looking at me! I can't even write a cheque in front of people, I end up signing where the amount is meant to go and spelling my own name wrong! It's so humiliating to have people look at me and judge me as being illiterate, it makes me angry and I've come to realise it's not just a trigger, it's a very real limitation.
I have many limitations that I have to take into account, those are easy to tackle, the ones that are more associated with my dyspraxia are harder to accept because with those it is not just my self-esteem but my sense of self-dignity that suffers. I cannot eat without dropping food or drink on myself, there have been rare occasions where I have managed to remain clean but I've come to realise that it is a huge limitation for me. When I want to look nice for an appointment it means I cannot eat or drink anything after I've got dressed for the occasion. Sometimes I have to go hours before I can eat but it's preferable to wait than to stand up in front of someone you're wanting to impress and then realising you have got egg on your top and ketchup down your skirt!
Stage Seven: Setting New Goals
Stage Eight: Take On New Challenges Every Day!
Were The Diagnoses Worth It?
I have no problem telling people about my neurodiverse differences now. Some people judge me but then they would have judged me worse when I was part of the underclass, on unemployment benefits for long periods, too poor to afford a good wardrobe, self-esteem was too low to even consider really putting myself out there.
Thanks to my diagnoses I have been able to discover why I work the way I do. Although I still feel frustrated by my limitations I have learned to work around them, something I was not able to do when I didn’t understand why I had the problems in the first place.
My life has gone from strength to strength and although I still face many barriers and many difficulties my self-esteem is improving everyday and with it so are my aspirations!
Prior to my diagnoses
- I failed school and left with little to no formal qualifications
- I struggled to find work
- I struggled to keep jobs
- I couldn’t manage my moods
- I had debts I couldn’t pay
- I had no prospects or aspirations for the future
After my diagnoses
- I was able to learn about why I work the way I do
- I was able to get a high upper second class honours degree
- I was able to work as an English Specialist helping mainstream students
- I was able to get elected into local government
- I sat on Management Boards, Working Groups, Council Committees
- I was able to work with CEOs, Council Officers, Voluntary Sector Officials and others on an equal footing
- I was able to start my own business
- I was able to hold events, do presentations to groups of professionals and others
- I was able to start writing my own blogs about neurodiversity
- Most importantly… I was able to imagine a life where I could make a valuable contribution to society, be a role-model to my children and show them that no matter how hard things are there is always a way to achieve the things you want to achieve!
My Advice Based On My Own Experience
Undiagnosed differences can damage your self-esteem beyond all recognition. Years of not understanding why you work a certain way, why you can’t do things that other people around you seem to find easy can lead to frustrations which can in themselves cause depression. In my case having these differences undiagnosed for so many years led to countless mental health labels being attached to me which also did nothing for my self-esteem because the doctors kept trying to treat the symptoms without first diagnosing the underlying condition which caused them. No matter how many antidepressants they gave me – my sadness at not being able to read and write, walk in a straight line, stay clean at meal times, follow simple instructions, manage my own finances, make and keep friends and so on, would always cause me to end up frustrated and depressed all over again.
Final Thoughts
Instead of expecting us to hide our differences to fit into a ‘one size fits all’ society – Society needs to accept our differences and enable us to fit into the world of school and work on an equal basis to our Neuro-typical counterparts and the only way they will do this is by us standing up and telling them we are different NOT LESS!
It’s time we take pride in what we can do and work to our strengths.
It’s time we show people why they need to
celebrate the difference
and bring us into their lives
so that they can see for themselves why
the Neurodiverse brain is the greatest untapped resource on Earth!