Tameside and Glossop adult autism service - patient stories

My name is Margaret, I’m 41 years old and married with 5 children. I got my official diagnosis at the start of this year aged 40.

I’ve felt different for as long as I can remember and could never understand why, no matter how hard i tried, some things that seemed to come so easily and naturally to others were a constant struggle and almost impossible for me.

I often felt like an alien and tried desperately to fit in by copying others. I also coped with challenges by rebelling, especially at school.

The one thing I found that came naturally to me was being a mum to my 5 children.

I was a stay at home mum for a long time before returning to working with children with autism and epilepsy. I now work in a nursery as the send room leader with children with a range of additional needs.

I’ve suspected I have autism for many years but put off going to the doctors for a referral. It had taken many years to get my now adult sons diagnosis of autism and I felt like I didn’t have the time or energy to battle for myself and maybe not be believed. I finally decided to go for it in the summer of 2019 after a friend told me that she had done an online self-referral to the Tameside adult autism team.

For me, getting my diagnosis of autism and finally understanding ‘why’ changed my life. It was like finally being able to turn on the light after years of stumbling around in the dark.

Through online women’s autism support groups I’ve finally met lots of other people who ‘get me’. I’ve discovered that my ‘quirks’ and things that everyone else thought was ‘weird’, actually are me just being me.

The journey of diagnosis was an acceptance, an understanding and I finally feel at peace in myself.

I am the most me I have ever been and no longer hide who I am.

I’m proud to be autistic and want to show other parents and children that this diagnosis isn’t the end, in fact it’s just the beginning.

When I was 10, I found out that I am autistic. This made me feel relieved because it gave me an opportunity to develop a greater understanding of myself and answered lots of questions in my mind. Because of my diagnosis, I am now able to access various kinds of support. At first I didn’t know much about autism, but through my own experiences and hearing about others, I do now.

Did you know that many more males are currently diagnosed as autistic than females? Statistics show that there are 3 males for every 1 female diagnosed. Many people think that autism is more prevalent in males than females, but this is not necessarily the case. So why is it that more males are diagnosed than females? Many autistic girls receive late diagnoses and are also more likely to be described as ‘anxious’ with an actual diagnosis often being ignored. This is because many girls have developed an ability to ‘mask’ their difficulties, like behaving in a particular way because they have learnt that other people do the same.

However, times are changing, and more and more girls are receiving a diagnosis, which helps girls to understand themselves better and develop a more positive attitude to their differences. People often misunderstand what autism actually is, because the spectrum is so wide and presents differently in every individual. So what actually is it?

Autism spectrum condition is a neurological condition that effects the way a person’s brain processes information. Many autistic people find social communication and interaction very challenging. Here are some other challenges faced by autistic girls, but remember – the spectrum presents differently in everyone.

• Difficulty forming new friendships – believe it or not, in the comfort of my own home, I rarely shut up! I can seem shy and quiet at first, but this is because I take a long time to become comfortable around new people, and the thought of talking to new people causes me extreme anxiety and stress.
• Difficulty in the ability to adapt – I have a very specific order and routine for almost everything I do, and if something unexpected happens I find it very hard to change my routine, and this can sometimes cause meltdowns.
• Literal understanding of information – Autistic people sometimes take information literally, meaning that they struggle to have conversations because they often don’t understand things like metaphors, sarcasm and figure of speech. For example, when I was about 4, I arrived home and my mum told me to put my bag in the toilet (meaning the toilet room). Me, taking it literally, actually put my bag in the toilet. That was the end of my peppa pig bag! Even now, as a 15 year old, I experience similar confusion on a daily basis, especially with sarcasm and figures of speech.
• Sensory processing issues – I could write a whole speech on sensory processing issues. But to name one, I can’t filter out noise. For example, if I am trying to listen to a teacher in a noisy classroom, or my friends in the canteen, my brain will tune into insignificant noises – one minute all I can hear is the clock ticking, and the next, I’ll randomly tune in to someone else’s conversation on the other side of the room.
• Avoiding eye contact – The chances are, if you insist that I look at you when you are talking to me, I won’t be able to process what you are saying. You might think I am daydreaming or being rude, but really I am concentrating, because making eye contact in any situation makes me very uncomfortable.

However, there are definite benefits of being autistic:

• Memory skills – When revising, I can often memorise my notes just by reading them a few times. Sometimes this happens without me even realising. Another example is I can listen to a song a couple of times and learn all the words without trying to.
• Special interests – When an autistic person is interested in something, they will probably know everything there is to know about that specific subject, and want to talk about it all day. But because they are so interested, and can apply themselves fully to this interest, many autistic people grow up to become experts in their field. For example, Greta Thunberg.
• Organisation – I, like many autistic people, am very organised. My bedroom is never a mess, I do everything in order and I always have to keep everything in the same place. If this can’t happen, it can sometimes make me stressed, but also means that I am always organised for school and could also help me be a good employee in the future.

One of our colleagues, who wishes to remain anonymous, shares their story on how taking the time to talk about mental wellness has changed their life for the better. 

"Over the last 2 years I’ve been on a difficult journey. Like many, throughout the COVID pandemic I struggled mentally, and as time has gone on, I knew I had to take action. 

A couple of months back I was diagnosed with autism. I never wanted a ‘label’ and was afraid of the stigma that this may portray, but over the years close family members have mentioned to me that I have autistic tendencies, and these had heightened post-pandemic. I personally felt things were really spiralling in work, at home and life in general was proving tough.

So, I decided to speak to someone. I knew it was impacting me at work, so I reached out to my leader who really listened and reassured me. They provided me with that safe space I needed to talk through how I was feeling and what was on mind with no judgement. This was the first time I had ever really opened up about this and by doing so I felt really vulnerable. It was the turning point for me, being able to speak to someone who listened, was the best medication I needed.

Following this, I sought professional help at my local GP. I had a consultation, completed questionnaires, and went through assessments, it was tough. I suffered self-doubts, anxiety and negative thoughts whilst going through this process as it took time to progress to my diagnosis. Since then, I have a deeper understand of myself and why I sometimes act like I do which means that I can learnt to adapt to situations in the future to avoid any stress. I now feel fully in control.

I’m proud of myself for being brave and honest, acknowledging that things weren’t right and asking for help when I needed it the most. In time of uncertainty, we do have the tendency to focus on the negative outcomes but talking to someone allows for a different perspective, reassurance and guidance. There’s always time to talk."