So today is World Autism Awareness Day, and I thought I’d write a little something. I have been reading so many posts online, and unfortunately lots of people think that autistics have zero empathy, can’t hold a conversation, have no friends or relationships and are pretty much destined to fail in life. I wanted to challenge some of these myths and stereotypes and show you that this isn’t the case at all.
Anybody can be autistic – you can’t tell if somebody is autistic by looking at them or even by having a surface level conversation most of the time.
Lots of famous people are/were autistic, Including Charles Darwin, Steve Jobs, Bill Gates and Albert Einstein. Autistic people are NOT stupid.
Autistic people can have friends and relationships. I am a busy working mum, I’m married, and I have been a police officer for a decade. I also have friends. I will admit I can struggle building new friendships as I’ve never been a ‘huggy’ person, and I always feel a bit socially awkward, but I do have lots of lifelong friends who I know will always support me and have my back.
Not all autistics like trains and maths – lots do and that’s absolutely fine, but often people will have more mainstream interests like bands or animals. These also don’t need to be lifelong interests. They can last weeks, months or even years, but are usually quite intense.
Autism is just as prevalent in females as males – it just often presents differently so is missed or diagnosed much later. Lots of females ‘mask’ or ‘mirror’ behaviours they have seen in an attempt to fit in. They will learn how society expects them to behave and practice this.
Autism is usually hereditary, and not always inherited from a parent – sometimes it is passed from a grandparent or aunt/uncle, but there’s a usually a family connection.
Autistic people can have empathy – some people actually have so much empathy they don’t know how to channel it. Others can struggle with recognising thoughts and feelings, but it doesn’t mean they don’t care, it just means that they need to work that little bit harder to understand.
Autistic people can hold eye contact. They are just more aware of it, and it’s a conscious effort rather than a natural one.
I was diagnosed with autism around a year ago. My daughter was struggling in school and was referred for an ADHD assessment (again this is hugely misunderstood and isn’t the naughty schoolboy stereotype people imagine, but that’s a whole other story in itself). During the assessment process, the consultant advised me to seek assessment myself, as he suspected I had it too. I did – I was diagnosed with both ADHD and autism, to my surprise. Until now, I hadn’t shared this with many people – I’m not ashamed, I guess I just hadn’t fully processed it myself and was scared people would judge me. I am me. I haven’t changed as a person, but unfortunately people sometimes see a label and have pre-conceived ideas of how you are supposed to look or act, and I didn’t want that.
I don’t really fit the stereotype, so my whole adult life I have been totally unaware why I’ve always felt like I never quite fitted in or why I saw myself as a bit of an outsider. Growing up I had a few close friends, but never fared well in group situations. I do struggle socially, but not in the way people automatically assume when they hear ‘autism’. I’m overly chatty, I often speak too quickly and don’t always notice the tone or volume of my voice. I jump into conversations and often cut people off when they are talking because I don’t always get when it’s my turn to speak. These are all traits of being autistic too.
A lot of people with autism also have a number of sensory issues. For example, to this day I can’t touch raw chicken – I hate the slimy feeling of it and will always ask my husband to cut it for me before cooking, or I pay extra to buy the pre-chopped packs! I also hate itchy woolly jumpers and nylon tights because the material really irritates me.
I massively struggle with executive function skills such as directions too. Ask anybody who knows me or who has worked with me and they will confirm as it’s a bit of a running joke. Thankfully we have sat-navs and Google maps, so it’s never caused me any real issues in my work or personal life. I once went the wrong way when I was driving to Alton Towers though, and ended up driving for two hours in the opposite direction!
People with ASD tend to be very set in their routines too. I have a job that’s structured, so this really suits me. Even when I’m driving home I always tend to go the same way because it’s a route I’m comfortable and familiar with and know well. If there are roadworks or diversions in place this can really stress me out.
I can get overwhelmed quite easily too. At work I need to stay calm and collected (which I have never had any issues with) but it can be exhausting, as you’re so aware of everything you say and do, so will often come home completely drained and not want to join in with family board games/films etc for the rest of the night.
Autism can be a real gift. I have an amazing memory. Just yesterday a colleague asked for a phone number I hadn’t used in years and I remembered it when nobody else did. I notice lots of little details other people don’t too. I am also very aware of the condition so that makes me a great advocate for my kids.
I think the main thing to remember is that autism is a spectrum condition, so not everyone struggles in the same way. It’s wrong to label people and make assumptions, and that’s why I wanted to share my own experience. ∎
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
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, 12th 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!
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 6th 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