Joyce CoomberSewell's Blog

In this blog I want to talk about the different experience of two people with autism, myself and a 21 year old.

Let me start with my own journey from school to my present day university.

I remember my first day at infant school, standing amongst a large crowd of adults and small children like myself. I remember a little boy clinging to his mother and sobbing his heart out, this boy later became the school bully.

When I started school there was no mention of dyslexia or autism, if you couldn’t keep up you were known as slow, or inattentive or even thick and stupid. Somehow, I always managed to stay up in one of the top classes, by this I mean I was not put in the class for the ‘less able’.

My overriding memory of school both primary and secondary was the people I was at school with. In the first few years of primary school I had one friend, we spent every playtime together, just the two of us. That was until her dad, who was in the army, got posted overseas. My then friend went to a group of girls and asked them if I could join their group and they said yes.

I spent the remaining years of my primary and secondary school life being on the outside of that group, never feeling like I quite belonged. The girls were never mean or nasty to me, I joined in the games that they played, but I never felt like I quite belonged. As we all grew older together, I discovered that they were meeting up at the evenings and weekends, going swimming or to the pictures together, but I was never invited.

In my secondary school years, I felt like the teachers removed me to stand outside the classroom door more often than being in the class. My school reports said things like, “if she spent less time helping others and did own work she would do better”.

Later in life I went to college to study English GCSE, but again I never made any lasting friendships. However, I did learn to hand in unusual possibly obscure subject matter for all my assignments. For instance, my story was on ‘Christmas through the eyes of the donkey’. This got published in the college’s Christmas magazine.

And on turning 60 I went to university to study for my Bachelor’s degree in Counselling, Coaching and Mentoring. I spent three years of my life, two full days a week, with the same cohort of people, with the same outcome as when I was at school. No one was unkind to me, we chatted together if the moment called for it, but I was never invited to go to lunch with them or join in social activities after the lectures.

I am now taking my Masters by Research where there are no lectures to attend or any cohort to be on the outside of. I have wonderful supervisors who help me, support me and direct me along the path to succeed.

Now let me talk about a young 21-year-old and their journey through education. They too started school around the age of five. Throughout their entire primary school experience, they felt they were treated differently than the non-autistics in their class.

In the morning they attended a normal class with everybody else, but always felt like they were treated differently both by the teachers and their classmates. At lunchtime instead of going into the dining room, those who were deemed ’different’ had their lunch separately. In the afternoon these children were again segregated into a separate class to learn more about social skills than reading, writing and arithmetic.

At the age of 11 this young person started in a special educational needs (SEN) School to continue their education. Though in this school they felt more accepted and treated more equally and were able to make friends with like-minded people, they were not allowed to take any meaningful qualifications.

Next this person progressed into college to take GCSE English and Maths and a BTEC qualification. Again, they experienced feelings of being treated differently, and though the BTEC course they had chosen had aspects that did not sit comfortably with them they continued to the end, finishing with a successful BTEC qualification.

This gave them enough points to continue on to university to take a Foundation qualification in computing. This is when they and I met, I became this young person’s mentor, and what a privilege that has been.

They have now completed their Foundation degree with a very high score and progressed onto the first year of their Bachelor’s degree in gaming.

During all of their experience of university they have not felt any of the stigma that they felt through their schooling and college life. They have made friends and been treated equally with the whole of their cohort by their lecturers.

So, what does this say about the 20^th and 21^st century experience of an autistic in education?

We both experienced prejudice from teachers and other pupils, we both experienced rejection and isolation during our school and college lives. But here is where the paths differ, I as a 60+ year old still felt on the outside during my Bachelor’s degree experience, whereas this 20+ year old found acceptance, friendship, and path into their future life.

Could this just be because of different personalities, different backgrounds, or is it be the difference between how older people and the younger generation view autistics?

When we first went into lockdown, I thought how wonderful that would be;

no social interaction, no face-to-face business interactions, just sitting quietly in my house all day with my furry cats, Kevin and Woof.

This could not have been further from the truth!!!

Zoom and more Zoom and even more Zoom. The wife even Zoomed me today to help me wrestle a website into submission. Now don’t get me wrong, I love Zoom, it’s a brilliant piece of technology and we couldn’t keep our business going without it.

We see all our clients over Zoom, along with our business networking, which is proving to be quite profitable. We joined the Federation of Small Businesses this week thanks to a lovely gentleman, Lee Harrington, that we met through the Twilight networking group.

I think a lot of people who have no personal experience of autism believe that autistics don’t particularly like social interaction or eye contact, but for some of us that couldn’t be further from the truth. Though I don’t particularly like large social gatherings, and wouldn’t dream of going to a nightclub, I do like to be around people especially if I have a role to play. In the past when I used to go to church, I was always in charge of serving the tea and coffee. And when I used to do face-to-face business networking, I normally had a role, collecting the money, leading the group or the whole area, sometimes even all three.

During lockdown I have really missed people, and even though I enjoy Zoom it’s not quite the same as sitting in the same room with other human beings. I am not looking forward to not being able to have my friends come over for coffee or a meal for the next month.

Luckily my hairdresser managed to squeeze the family in last night for home haircuts, so we don’t all end up looking like hairy monsters like we did last lockdown.

Sadly, we’ve had to cancel a five-day holiday to Camber Sands for the second time. We’ve also postponed visits to both mine and Jane’s parents until hopefully we can travel to see them before Christmas.

But this post isn’t all doom and gloom, all of our clients have agreed to go on to, yes, Zoom, making our income secure. Today Jane finished her corrections for her PhD. One of our young men is still able to go to work and the other two are still studying. We have each other, we have our family and friends, to Zoom with. We can still go shopping and go out walking for exercise. At the time of writing, we all have good health with no Covid-19 symptoms, nor do any of our family and friends.

So, within our own little bubble life is continuing, with love and maybe the odd disagreement, but overall, we will survive, no, more than survive, this epidemic.

As you read this, we send you love, kindness and the hope of good health. Follow the rules, stay safe, be kind to one another. These days will pass, and things will return to normal; we don’t know when, but they will.

Are you an older person who has always wondered why you’re a little ‘weird’ and ‘odd’ compared to the other people around you?

Even as a child I wondered if I had been dropped by aliens from another planet. I always felt like I was on the outside of every group, be it school, St John’s Ambulance Brigade, Girl Guides or at 15 years old starting work. This progressed throughout my life, in my marriage(s), having children, even running my own successful company.

Then the grandchildren arrived…I have 11 grandchildren and 6 are diagnosed as autistic. Aha! and here all was revealed…

At 1^st I thought there was no point in being diagnosed at my mature age, late 50’s, but then I realised that I could be the example these young people needed. Being autistic needn’t stop you being happy and having a fulfilling life.

To be honest it was not an easy straightforward process. I started this adventure by going to see my GP and being referred for an initial assessment. In my early 40’s I had already been diagnosed with a higher than average IQ and dyslexia  and now they also added ADHD and dyspraxia. To obtain an autistic diagnosis I had to wait for another appointment further up the medical chain.

Some months later this appointment, with 3 questionnaires, came about. The medical chap asked me what my 1^st thought had been when I met him. Now I know the ‘correct’ answer should have been something safe, maybe complimentary, but I was here for an autism diagnosis, so I decided to be honest!!!!

My thought, I said, was “why hadn’t he ironed his shirt?”

You can imagine this did not go down well with this young man, as he stroked the front of his very crinkled shirt.

One of the questionnaires was to be filled in by someone who knew me between the age of 5 and 12. Whilst this might have been possible for some, me being slightly older with no living parents and only estranged siblings, this was not possible.

Eventually my letter came to say though he was 98% positive I was autistic because of not having the questionnaire filled in he could not give me the diagnosis.

And so, the processs had to be restarted. Back to the GP I went and this time I was referred to the Maudsley Hospital. 2yrs later, now being over 60, I received an appointment with again the 3 questionnaires, 1 of which I still couldn’t get filled in.

This time, the 1^st appointment was all about copying shapes, making up stories from pictures and general  chat. Several months later my 2^nd appointment arrived, this time with a psychologist, no crinkled shirt this time.

A couple of months later my full diagnosis arrived.

Now you might be saying “that’s a lot of rigmarole to go through”, but there again my grandchildren are worth it, plus so am I.

I have discovered a lot about myself over the intervening years, why I am the way I am, why people react around me the way they do, why I think how I think, why I stim, why I mask. This has all helped me feel less ‘weird’ less ‘odd’.

So, if you relate to any of this maybe it’s time for your adventure of getting diagnosed.