A wonderful mother, carer, and West Mercia Police staff member has written an emotional blog to mark World Autism Acceptance Week. They have chosen to write this anonymously in their words, from their struggles and their feelings about caring for their non-verbal six-year-old autistic son.

I am my child’s safe space. He doesn’t experience the world as others do, and when I’m not with him it can cause him physical pain – so much that he melts down. Unable to cope, unable to function, he hits out and hurts himself.

My child can’t speak, so he gets frustrated when he can’t make his needs understood. Even when I am with him, sometimes I can’t reassure him enough that scary things are OK.

This week, water is like acid to him – he insists on being carried so the water won’t touch his shoes. It’s not just bath times, he sometimes won’t drink water. We know that next week water will be OK, but there will be another thing.

I’m constantly exhausted. I feel guilty: am I doing enough? Should I be trying this strategy? When I’m awake with him at 2am, researching the internet for the latest therapy that may make his life and our lives easier, my mind wanders towards the future. Being told that he will need lifelong care is scary to me.

I need to work – not just for money but for my mental health. I need to be more – more than a carer, more than a mummy. I need something that is just for me. It’s then that the cycle of guilt starts again.

We need understanding and a bit of compassion. When he’s not at school, my son can only be cared for by three people. Those are me, his dad and our lifeline, his big sister. It has to be someone he knows, someone who can be thinking things 10 steps ahead, so he doesn’t begin to unravel. He can’t cope and hurts himself or others. It needs to be someone who knows how he likes things to be. Someone who can carry a six year-old child, who at times will suddenly need to leave wherever we are. It also needs to be someone who can be fun.

When he is off school sick, on an inset day or during the summer holidays, I do have to drop everything. This affects my leave, pay and hours of work. I need to be able to
take calls from his occupational therapist, speech therapist and dietician. This all has a great impact on my job.

I’m so physically exhausted I can’t think straight, but my son needs me. I’m doing my best, that’s all I can do. ∎

This blog was originally published on the West Mercia Police intranet – it is reproduced here with kind permission of the author

As this year’s Neurodiversity Celebration Week begins, we share a blog by DC Daley Jones in which he talks candidly about how ADHD has shaped his life

My name is Daley Jones, and I am a Detective Constable in the Metropolitan Police Service (MPS). I’m 37 years old. At the age of 36 I was diagnosed with combined ADHD.

I am going to try to put into words my life’s experience of ADHD, including my childhood, academic career, and my experience working with the condition as a police officer for 14 years. I am still learning about the condition, and how it affects me. I am by no means an expert and am wholly aware that one person’s experience with ADHD is totally different to someone else’s.

Childhood and academia
When I look back now, at my childhood, it is apparent that I struggled with ADHD at school. My wife recently discovered a load of old school report cards when we were clearing a cupboard at my mum’s house – the words ‘lack of attention’, ‘fidgety’, ‘messing around’ and ‘interrupting’ frequently appear. I regret there not being greater awareness back then, as diagnosis earlier in life would no doubt have helped me in managing school. It is apparent to me as an adult that this lack of awareness in the education system is still a major issue. I’ve met parents of children with ADHD who have terrible experiences of how their children have been treated at school. A large proportion of the common traits of ADHD will present as naughty behaviour. Awareness of neurodivergent conditions is not mandatory for a teacher’s training.

However, I also consider myself lucky. I had a stable childhood with loving parents. They may not have been aware of my ADHD but worked hard to make sure I got all the support I needed to succeed academically. It is apparent to me that this is often not the case for children and young adults growing up. The lack of awareness and diagnosis goes some way to explaining the massive prison population with undiagnosed ADHD.

As a child I learned to develop my own coping mechanisms. (I know this now, armed with a diagnosis; at the time these behaviours just helped me, but I didn’t know why I did them.) For as long as I can remember I have had either a straw, or a small plastic cotton bud stick with the cotton wool removed – I roll this between my fingers frequently. It’s my way of dealing with my hyperactive impulses. People with ADHD will develop their own ways of dealing with these urges. Me, my parents and my partners always thought this behaviour odd, but diagnosis brings understanding. I still do it now, frequently but with less shame – if you meet me, ask to see it!

As a child I’ve always struggled to follow instructions. This is especially prevalent when the instructions are around something practical. In the Scouts I was seemingly incapable of tying the knots, securing the guide ropes, or putting together tents. Although these things are seemingly innocuous, they build up. You get to a point where you ask yourself “Why can’t I do these tasks? The rest of the group are doing it, perfectly. You are clearly an idiot or stupid.” This issue has persisted into my adult life, and has led to a crippling self-doubt and self-loathing. (People with neurodivergent conditions will often also have dyslexia, dyspraxia or dyscalculia.)

When immersed in subjects I enjoy or have an interest in, I could talk for hours. In history at school and university I would answer every question, read everything put in front of me, and seek out and watch hours of documentaries. On the flip side, tasks that didn’t interest me, or tasks that had a low priority were seemingly ignored or forgotten about. Coursework and revision have always presented a struggle.

At university I’d be set an essay. I’d eagerly run to the library to get the material I needed for research, sit down, open my books and then… NOTHING. My brain is saying: “Daley, you have six weeks to do this. There is no priority. There is no immediacy. Do something you’ll enjoy. Go to the pub. Play some Championship Manager. Hang out with friends.” It was, and remains, a nightmare.

Cue several days prior to the deadline: I am now a frantic ball of activity. In bed by 10pm, up at 5am. Working every moment I could. Pressure, thrill, dopamine: these are the things my brain needs to work. The work would almost always be done… Even if it involved me sprinting to the history department, my latest essay on a floppy disc, to be handed in five minutes prior to the deadline. As you can imagine, it’s not the best way to work. Trying to explain this to someone who is neurotypical is a challenge… People do not understand.

Relationships
Maintaining relationships with ADHD is often a struggle. With friends I frequently interrupt conversation. I’m not trying to be rude, I possess a very poor short term memory. There’s a very real chance if I don’t say what’s on my mind, I will forget it. This also explains why ADHD-ers often lose things – our brains do not develop the ‘memory’ of where we placed the keys/phone/baby bottle/Ark of the Covenant.

My inattentiveness and distractibility will present as rudeness to the uninitiated. “I’m talking to you about something important, why are you looking at the TV/your phone/the picture on the wall?” Given these issues, it is easy to see how arguments can start. I also have RSD (Rejection Sensitive Dysphoria) – in simple terms, this means that I will often perceive as criticism something said innocently. It will cause me extreme (seemingly irrational) hurt, and unsurprisingly can often lead to a strong defensive reaction. Again, this has proved an issue in my relationships, arguments created from misunderstanding. My first marriage was a failure (there were other factors at play for sure) but my undiagnosed ADHD certainly didn’t help. However, inadvertently it did lead me to diagnosis. I’ve suffered my entire life with low self-esteem (not understanding things the entire room understand). This, coupled with the failure of my first significant relationship, led me to seek help. I was lucky enough to have a good GP, who put me in touch with a counsellor. I can’t recommend counselling enough. I’ve never had an issue talking about my feelings and sharing my emotions, but the way in which counselling allowed me to find the answers for myself was immensely helpful.

In 2014, my counsellor stopped me before I left a session and said “I think you might have ADHD.” I was given some paperwork, and a light bulb went on in my head. Suddenly all my struggles and feelings of inadequacy made sense. I can say hand on heart, it was one of the best moments of my life. My only regret is that I did not follow this up with a formal diagnosis. My mindset at the time was “This is enough. I now know why I’m different.” Little did I know then, that there was so much more to learn about my condition, and more help I could receive.

Working in the MPS
Given the thrill, and compassion I feel, it is probably no surprise I ended up working for the police. Joining seemed an impulse decision. The MPS was at a graduate fair – I put my name on the mailing list, filled in the application, and passed the assessment day. I passed the fitness test… and there I was, 12^th February 2007, at the gates of Hendon ready for 17 weeks of training!

I struggled during my probation and my time in uniform. Looking back now, I needed someone to nurture me, put an arm around me, and understand how my brain works. What I got was a portion of tough love, a ‘sink or swim’ mentality. This isn’t a complaint, I learnt a lot – and it’s a tactic that’ll work for many. It’s just not what I needed. I needed a more structured working environment, and so I gravitated towards CID.

CID work, and prisoner processing, unbeknownst to me at the time give me exactly what my ADHD mind craves: structure. Your day starts at X. You will be assigned a prisoner. You are to work on this case until a disposal decision. It also speaks to the thrill seeking part of my brain: you have to deal with this prisoner – in 24 hours! Clock’s ticking, get those tasks done… quick quick quick. It was when that case was bailed that the problems would begin…

As with my brain’s academic mindset, a case with no immediacy is a struggle for me. My brain struggles to fire into gear. I know the task is important; I know completing the task will directly benefit me; I have the time and means to complete the task. But my brain will just say “No, not important, not interested, what’s in it for me?” This inevitably leads to stress at work, and a feeling that you are lazy or incompetent – feelings that need no encouragement from others. Diagnosis has allowed me to understand that I’m none of those things. There’s a reason why you struggle, let’s think of a way to manage this.

I left the MPS in 2017 for a job in the private sector. I won’t go into too much detail, but needless to say I failed miserably. It is apparent to me today that the reasons I failed are directly related to my ADHD: lack of organisation, a struggle with grammar, and deadlines for “boring work”. Losing what I thought was my dream job was a real blow to my mental health, and was something that took me a while to recover from. Needless to say, I re-joined the MPS in 2018, and remain grateful to the organisation for taking me back!

“Harnessed correctly, ADHD brains are a beautiful commodity”

Diagnosis and the future
Towards the end of 2019, several friends of mine on Facebook announced they had been formally diagnosed with ADHD. Given my past struggles, and the relative ease in which my friends had been diagnosed, I decided to look into it.

The route I took is called “right to choose” – in short, private companies are paid by the NHS to diagnose ADHD. I spoke to my GP, who was initially unaware of the scheme – he referred me to a company called Psychiatry UK. I completed various paperwork tests (including the Harvard ADHD screening test) and was given an appointment with a psychiatrist.

On the 6^th April 2021, following an hour-long appointment in which I discussed all of the above, I was formally diagnosed as having “combined ADHD”. A short while after I received a letter explaining my diagnosis. The letter recommended treatment using medication.

After a delay, I started taking medication in July 2021. The drug I was prescribed goes by the brand name of Elvanse. Chemically it is referred to as Lisdexamfetamine. Given that the drug is an amphetamine, it comes as little surprise to me that many young adults start to self-medicate with illegal drugs, further pushing them into the criminal justice system.

I went through a process called “titration” – during this period, the dosage of my medication was slowly increased. I reported back to my nurse the effects of the drug on my ADHD symptoms (inattentiveness, hyperactivity etc.) whilst also reporting back on any side effects. I also gave my weight and blood pressure readings at the same time. It’s a powerful drug that can restrict appetite and potentially cause raised heart rate.

Through time, my nurse and I have worked to a point where I am comfortable with the dosage I am on. I had a few interesting moments with splitting doses (for example taking 30mg of the drug in the morning and another 30mg in the afternoon) before eventually settling on a fixed 60mg dose taken first thing.

How does it help you, I hear you cry!

I actually struggle to put this into words. In short, the drugs have helped me immeasurably. In the past I would get a million thoughts a day, but I now seem to be able to step back and focus on one thing at a time. I make lists of the things I have to do, and I am seemingly able to prioritise actions. As you can imagine, this has helped my working life a great deal.

At home, my wife tells me I’m more thoughtful, less forgetful and able to complete tasks at home that involve coordination and organisation (I enjoy cooking now – I’m no Gordon Ramsay, but recently cooked for six people with no drama or fuss.)

I am alert and able to perform at work for longer. Pre-diagnosis, I would be a sleepy mess by the afternoon. (There were times I had to sneak off for power naps.)

However, the biggest benefit of my diagnosis has been understanding. My wife and I have read about the condition together. As well as many light bulb moments we had between us – “Ah, that’s why I do that!” – we are now aware of the myriad of other effects of my condition, especially on the emotional side of things. This has strengthened our relationship tenfold. My wife is an immensely patient woman, but her willingness to understand me, and my condition, has been the biggest blessing in my life.

At work, I now know I’m less suited to longer term work. I value the need for structure. It’s not always easy given the demands of my profession, however, I am lucky enough to have management who understand my condition. A willingness to listen and try to understand has been the biggest benefit to me in my working day. Understanding how you work, and trying to get yourself in a role that works to your strengths is key. (There are resources available that tell your employer about ADHD and suggest reasonable adjustments.)

The interesting side effect of diagnosis is that you be acutely aware of how the condition permeates every fibre of your existence. I’m not saying that I’m nothing without my ADHD, but it is a part of me. I am, with time, learning to love my condition. Many of the negative effects I have mentioned are also the parts of my character that my friends and family love the most: I’m loud, I’m silly, I want to have fun, and I want to learn. I want to stimulate my brain and want to understand everything I see and do. Harnessed correctly, ADHD brains are a beautiful commodity.

What’s next? Well my “treatment” will only extend as far as diagnosis and medication, and I am seeking further help. ADHD counselling and coaching exist, but they aren’t cheap – I have an application with the DWP asking for funding to help me with these. I’m 37 – a lot of these behaviours I’ve developed have been coping mechanisms I’ve adapted to my life to help me get through. It would be nice to learn more strategies and hopefully be in a position to combat my negative traits.

I have daughter who, most likely, will have ADHD. The hereditary link is 85% (it’s as common a link as height and eye colour). I need to learn more to be able to be her advocate growing up. As I said before, awareness in schooling is still woefully inadequate – it will be my job to fight for her rights.

Most overwhelmingly though, is my desire to help others. Since my diagnosis I have been as vocal as I possibly can be. I regularly post on my social media channels. It’s been heart-warming to have several people approach me privately, thinking that they also have ADHD. It is with immense satisfaction I talk to them about my experiences and try and point them in the direction of help.

I am pushing, desperately, for greater awareness. I’ve already alluded to the staggering numbers of undiagnosed people in prison. There is also a massive issue with undiagnosed girls, for whom ADHD often presents differently to boys – girls tend to have the inattentive “day dreamy” attention deficit disorder, rather than the boyish madcap hyperactivity.

I want the MPS to roll out training to all staff around ADHD, and other neurodivergent conditions. Through awareness, we can better deal with those we meet daily with these conditions. I’m not suggesting we will be in a position to diagnose them, but awareness will allow our staff to treat them with the compassion and care they deserve. And maybe, just maybe, we can point a few of these children and young adults down the right path to help and a better life. ∎

This blog was originally published on the Metropolitan Police Service intranet – it is reproduced here with kind permission of the author

Simon Dobinson is a Commander in the Metropolitan Police Service – here he talks about his diagnosis with Asperger syndrome, a condition on the autism spectrum, and how it affects his approach to work and personal life

I have Asperger syndrome. There you go, that is the first real tell as I can be direct and to the point.

There is no such thing as a typical autistic person, there is extraordinarily little that can be said to be true or valid when pertaining to the whole of the population described as autistic. There is no one-size fits all approach nor any description of an autistic person that will be true for all individuals.

Asperger’s is just one form of autism and a Google search of Asperger’s will throw up a whole range of different traits, which can significantly vary from person to person. So, traits that I show? Repetitive behaviours (sometimes I subconsciously trace letters with my finger when I notice words on signs, notice boards or even if I have just heard them), sensitivity to changes in heat, touch and smell (I cannot bear the feeling of clothing labels!), social difficulties, clumsiness and a tendency to become focused on certain interests which can become all-consuming (I challenge anyone to beat me on a zoom quiz on music intros of all genres!)

I remember the moment when I first began noticing that maybe there was something different in the way I think, feel and behave to other people. Last year during lockdown I was listening to a radio programme which featured an interview with the singer Gary Numan, who talked about his own experiences as someone with Asperger’s. I remember being struck at how ‘normal’ he sounded when speaking, how lucid and conversational he was in response to questions. This was a turning point for me as I suddenly questioned everything I had ever thought about Asperger’s and autism. I began reading about Asperger’s and discovered many character traits, ways of thinking and behaviours which I displayed. As a result, I was tested and diagnosed with Asperger’s. I was shocked, but at the same time relieved. Suddenly things made sense to me, and many things made sense to those who knew me.

I sat there and began questioning why I had not recognised this before and why I didn’t feel different to other people. The reason was simple: I didn’t feel different to others because everything I had ever known was what I believed to be normal. No one else had ever commented on it as I had managed to develop what I now know to be coping strategies since childhood. Throughout my adult life, I have picked up on small things that have given me a clue as to how I am different. I remember listening to someone describe themselves as ‘not a natural empath’ even though they led and championed the importance of wellbeing and the benefit of feeling the emotions of others. This is something I am committed to yet I sometimes struggle to feel the emotions of others. This does not mean I am uncaring or insensitive to others – it just isn’t always that obvious nor as easy to recognise for me.

Being a senior leader in an organisation which is all about people requires us to be emotionally intelligent. For me, this means having to dedicate my full attention to actively listen and pick up on things like social cues and body language which may be much easier for others to see. I have learnt that multi-tasking is something that I can only aspire to do. I can get very focused on issues, sometimes to the detriment of other things – the times I have walked into objects or banged my head on something just inside my peripheral vision is shocking and painful! Whilst the ability to focus and work through complex tasks is a blessing, I have had to learn to take a step back which helps rebalance my perspective and give me that more important broader awareness.

I remember an occasion at a leaving do where the room was full of people, many of whom I knew. I remember feeling nervous and completely ill at ease and a friend of mine came up to me and simply said, “relax”. I think back now and wonder whether they thought I had Asperger’s or just recognised my anxiety. What still baffles me though is that I have no inhibition in standing up in front of hundreds of people, talking with confidence and ease. However, I do know that I have had to learn this skill and often the confidence I have comes from my belief in what I have to say. Why it is different socially I don’t know, but there’s still more I need to learn about Asperger’s and me.

The job has given me a career full of challenge, excitement and reward. Previously I have actively sought out roles that suited the way I thought and felt, managing risks, using decision-making frameworks, clear rules, governance and structure. But to make the difference I wanted, I had to work hard to become more comfortable with navigating the grey and intangible space where things can be less clear-cut and far more ambiguous. I now dedicate time to think, reflect and become more self-aware by asking for advice and really listening to others, which helps me grow as a person and as a leader. Most importantly though, I am able to be myself, be individual and continue to thrive in an organisation that values and celebrates difference.

So thank you and well done for reading thus far… My advice to those of you who may have any form of autism is that we have nothing to fear from being different and we have a tremendous amount to offer this job and the public. For those of you who aren’t autistic, be curious and value the difference everyone in this organisation brings. Am I anxious about it and fear what people may think? – Yes. Was I nervous about writing this blog? – Yes. But I wrote this because I feel a huge responsibility, as someone whose professional and personal purpose is to make a difference and help others, to stand up and cry out that it’s ok to be different.

Whilst I grew up in the 80’s and loved the music, I was never a big Gary Numan fan – but all the same, Gary, I thank you. ∎

This blog was originally published on the Metropolitan Police Service intranet – it is reproduced here with kind permission of the author