Hope Lightowler describes her experiences before and after diagnosis, in an exclusive extract from Responsive Communication, a new book showcasing techniques for recognising and supporting people living with sensory issues. This article discusses themes including self-harm and suicide.
My name is Hope Lightowler and I am 19-years-old. I was diagnosed with autism privately in January 2017 and got an NHS diagnosis in September of that year. Around the same time, I was diagnosed with Irlen Syndrome, a perceptual processing disorder. Earlier in my teens I received diagnoses for obsessive compulsive disorder (OCD), generalised anxiety disorder and depression.
"I was made to feel it was my fault that cognitive behavioural therapy wasn't working."
At first I hated my autism diagnosis. But at the same time I was also relieved. I was embarrassed too, which is strange because I have never been embarrassed by my brother’s autism. I think I was embarrassed because I was worried about how people would see me now – and that people would see me as fragile or as weak because I was disabled. I also didn’t want people who said I was autistic previously to be right, especially my mum. My autism diagnosis has actually helped me to become better, as I now know what the problem is and so can now alter the support I receive.
What do I mean by "problem"?
Before my diagnosis, I had been with mental health services for a while. I first went to CAMHS in Year 9, when I was caught by a friend trying to get a blade. I explained my plans to kill myself. She told the members of staff who called my parents. I was diagnosed with OCD and was given a psychiatric nurse (CPN) and went through cognitive behavioural therapy (CBT). I was discharged after a period of time. Then after about a year, as my GCSEs were coming up, I started to get ill. I wasn’t sleeping and my anxiety and OCD and depression were getting worse.
I was prescribed medication and given CBT and family therapy. I was eventually put on a second medication, then sent to hospital. I had been through CBT several times and couldn’t understand why it wasn’t working. I was also made to feel it was my fault and told it just wasn’t the right time. I now hope to do CBT again but hopefully this time because of my diagnosis it can be specialised to autism.
Before my diagnosis I always wore earphones and was constantly listening to something, as if I didn’t have this input every little noise would affect me and make me feel on edge. It would just build up like layers being added, until eventually it would boil over and I couldn’t stand it. Since my diagnosis I have found sensory aids like noise cancelling headphones, which have helped so much.
Black and white thinking
I was and still am easily manipulated due to my inability to see the bad in people because in my mind it’s very black and white; you are either all good or all bad. This also means that I either like or dislike people, there is no in between. This can cause problems, as once people are assorted into these categories it’s hard for me to change my perception. This is the same for my opinions, although I have got better at learning to listen to other people’s points of view and not always seeing issues one way. People used to think I was being stubborn and purposely rude but now most people know I just think in black and white because of my autism. This has led to less friction. I now myself understand why I’m so rigid with my thinking and don’t get as frustrated with myself.
I have always found it difficult to talk to people, especially new people, as it is scary to not know what the other person is thinking about what you’re saying. It makes conversation tiring as you’re always second-guessing and trying to figure out the other person. Fighting the negative thoughts and feelings is really tiring and eventually you are too tired to fight them. It’s this that leads to self-harm and suicidality.
- See also: I need urgent help, I'm feeling suicidal
I used to have severe panic attacks that led to me collapsing and my body going into spasm. I would only sleep for two or three hours a night. I was constantly on edge, constantly overwhelmed and overloaded. Any little thing could tip me into self-harm and I was self-harming several times a day. My OCD was controlling me: I couldn’t even blink without having to count to five. My everyday revolved around the number five and avoiding germs and making sure things were straight. I had a lot of intrusive thoughts and images and it scared me as they were always threatening to hurt, or showed my family members being harmed.
I had to drop out of sixth form after I collapsed in an exam. I was struggling to cope with getting through a single school day. After this I got even sicker. I was collapsing from panic attacks. I became a recluse. I wouldn’t get out of bed as I didn’t have enough energy but I also wasn’t sleeping. I had constant brain fog. I couldn’t hold a conversation as I didn’t have the energy and I was so paranoid my brain would twist things. The constant internal commentary made it hard to concentrate. I would get confused between what people were actually saying and the thoughts I thought I could hear, which led to arguments and generally mistrusting people. I wasn’t doing anything: I would just stare off. I was like a zombie, I was having a complete shutdown. I was no longer functioning. I was in a catatonic state. When I was speaking it was slow or I would stammer and I would forget about what I was saying half way through a sentence. This still happens when I’m overloaded, but mainly when I’m shutdown.
I had been seeing a community practice nurse and a psychiatrist for a long time before I got this ill. I always saw them at a clinic. We as a family had been seeing a family therapist as they felt that my problems were with my family and my relationship with my parents, which was inaccurate, although home was chaotic at the time. My psychiatrist wanted me to go into hospital in order to reduce my medication and to try me on something else as well, as he was concerned about all the plans I had, and how low my mood was and the fact I couldn’t hold conversations. He was also concerned as my Dad was away and so my Mum was looking after four kids, two of which had additional needs, so Mum couldn’t give me one-to-one observation 24/7, which is what he thought I needed. I refused to go into hospital as I just didn’t want to go and I just wanted to be left to die at that point.
A male doctor and a female social worker came that day. I couldn’t answer their questions and they felt I needed to be sectioned under Section 2 of the Mental Health Act.
I was told someone had to watch me all the time and was showed my room. I went straight to bed. As they were searching and logging my things, I couldn’t get changed. I woke up confused and feeling all fuzzy. A member of staff made me some toast and passed it through a hatch. I then wanted to change my clothes. They were being held in what they called the cage. I picked the clothes I wanted and they put the rest back in the cage.
Whilst in hospital, I was constantly overloaded and overwhelmed. There were alarms blaring all the time. It was all bright white strip lighting and staff not following the rules, or constantly changing the rules, which was the hardest part for me.
One incident stands out more than most and shows the lack of understanding and misunderstanding of my behaviour. It’s the reason I was removed from this ward and banned from returning. I went out with a member of staff on leave and I went to the shops where I was looking for an art book, which happened to have a metal binder. I was getting an art book as I was doing an art project, so in my mind I needed a proper art book and there was no budging on this. Nobody had told me not to, that it was against the rules. Other patients on the ward had art books and just normal notebooks with metal binders in their rooms. I knew this wasn’t going to happen for me, so I wanted to put it in my restricted cupboard or leave it “in education”, as that is where I would be working on it.
When we got back, the ward manager came to tell me the book would be ‘going in the bin, as it’s a ward rule’. I start to wind myself up. I point out how some of the other patients have a metal binder art book in their rooms and that I just wanted to have it in my restricted cupboard. She says that it is judged on an individual basis and I’m a risk and that’s why I can’t have it. I point out how she said it wasn’t allowed on the ward full stop and how I understand I’m a risk, which is why I want it in my restricted cupboard. We keep going back and forth. She says I’m not allowed to have it, slams her office door in my face and ignores me.
This experience was all just like a red rag to a bull. I started to go into a meltdown which led to a rage, so the ward manager got a torrent of abuse from me. I just couldn’t understand and nobody was explaining; she just kept repeating herself. If only somebody had just explained to me why, properly. When the staff were telling my mum about it they couldn’t understand why I had got so irrationally upset. My mum tried to explain that I think in black and white and think literally and so that’s why I got so upset.
I was in hospital for five months in total. I found it stressful. It didn’t make me any better, it gave me more ideas on how to kill myself and self-harm and made me more anxious to be in the outside world. It made me distrust professionals and I found the whole experience traumatic, although I did make some good friends who have helped me as they are a lot more understanding and we have a lot in common.
Pursuing an autism diagnosis
Before I was allowed to leave the hospital, and after two overdoses on the ward, I had to be seen by a doctor and nurse from CAMHS. When my mum talked to them, they asked if she thought I needed to be in hospital, which she said no to. She and my dad explained how Christmas is stressful for me and she felt the waiting for the autism assessment, which we were by now pursuing, was causing this anxiety as well. They agreed and said if we had the means, to pursue a private diagnosis.
In the end, we met Phoebe Caldwell, a practitioner in "intensive interaction" who works with people on the autistic spectrum. She gave us a lot of advice although she told us she was not able to give me a diagnosis, as she is a science doctor, not a medical one, but because of my severe sensory difficulties she said that we should go ahead with trying to get a diagnosis of autism. Her advice was invaluable and led to me getting my sensory equipment aids and Irlen lenses.
After seeing Phoebe, we received a private diagnosis having shared our evidence. After a further two years, I received an NHS diagnosis. I finally got a social worker, who then did an assessment, which has led to me getting the right support. I now get 40 hours per week of carer’s hours. This allows my mum to go to work and me to study and get out. It gives my mum a needed break and me a needed break from her. Most importantly, it helps me be an independent young adult and do what I want to do.
I kept looking for educational placements as I love to learn. I also knew that learning would give me something to concentrate on and look forward to and structure my day with. There have been some setbacks but I now do two online A levels in sociology and history and am meant to be going into college, starting in September for an hour a week. I am also doing a BTEC in applied science. I already go into college for three hours once a week to do independent study in the study area, with help from a support assistant. Once I have finished my courses I hope to go to university and do a biology/biological sciences degree with a foundation year away from home. If I do go away to university I will be living with a family through a scheme called Shared Lives, as living on my own would be too much and I wouldn’t be able to cope.
I have got my sense of humour back and my mood swings aren’t as frequent. Professionals aren’t always right. There were many times where we argued I was autistic, not experiencing a personality disorder. Most of the arguments with mental health staff come down a lack of autism training and awareness.