Learning Disability Today
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I was admitted to a Child and Adolescent Mental Health Service (CAMHS) psychiatric unit in 2017 as an undiagnosed autistic and again in 2019 when diagnosed autistic.
Being on a psychiatric unit can be a traumatic experience for anyone, but for an autistic person the experience can be even more difficult. For us, the loss of control, new surroundings, unpredictable environment, new people, lack of regular routine, and lack of control over the sensory environment can exacerbate the difficulties we may be experiencing.
“Blocking us from our special interests can feel like depriving us of oxygen. The more you stop us engaging with our special interest, the more distressed we become”.
There are some fundamental reasonable adjustments which can be made to accommodate autistic people on psychiatric units which can significantly reduce anxiety and stress and increase our chances of returning home or to a community setting.
When I was admitted to a psychiatric unit for the second time I was presented with an agreement I had to sign. It listed unit rules and statements such as “I will not hurt myself”.
I refused to sign it.
I was told I didn’t have a choice; I had to sign it. This caused me to go into meltdown. I couldn’t sign something if I couldn’t one hundred percent guarantee that I could stick to it. Autistic people like to keep their word and we can find it very difficult to promise something we may not be able to keep.
Thankfully, for me, the consultant recognised this and allowed the wording to be changed to “I will try not to’ hurt myself” which helped significantly. I signed the agreement and that was that. Sometimes a reasonable adjustment to help an autistic person is as simple as that – flexibility and a willingness to adjust the rules to meet their needs and reduce unnecessary anxiety.
The next obstacle is when you and your bags need checking upon every entry to the psychiatric unit.
For an autistic person, having someone – particularly a stranger – touch our things and our clothes can be extremely difficult and cause a lot of anxiety. This can be for a number of reasons: needing possessions placed in a certain way, a need for control, or worries about germs – Obsessive Compulsive Disorder (OCD) occurs in 2-3% of non-autistic people but this figure may be up to 17% in autistic people.
This issue not only presents itself in bag checks upon entry but also during random room checks. Something which really helped me with this was having a staff member who I knew and trusted checking my things, being allowed to see them wash their hands before doing so, or even them watching me check my own things. I was often told this encouraged dependency on certain staff members or encouraged my OCD but I disagree with this.
The fear of having my possessions touched discouraged me from wanting to go on leave because the thought of returning to this was too much. Random room checks were also particularly distressing. Whilst I understand the reason for these (to check safety or for possession of confiscated objects), I think the risk needs to be balanced with the anxiety caused on an individual basis.
Perhaps the individual can know what day the room check will be on or it could be done by a trusted staff member.
Once an autistic person is admitted and beginning to partake in the daily life of the unit, more issues arise.
A key factor which is important for many autistics is routine. Going into a psychiatric ward can remove this routine, negatively impacting one’s mental health. Many of us find that removing routine – something fundamental to our ability to go out into society and function – has negative effects on our physical health too.
Staff can help by supporting us to draw up a timetable and writing in regular time slots of appointments, activities, and the unit’s daily routine. A lot of what happens in a psychiatric ward can feel disorganised and unplanned. Having this regular timetable can provide a sense of reassurance and feel grounding when everything surrounding us feels chaotic and out of control.
For things like ward rounds which tend to be allocated a time period e.g. a Thursday morning, it would make this more comfortable for autistic people to be given a regular time slot. This prevents us from waiting anxiously all morning, unsure of when we’ll be called.
Special interests can be very intense for us as we can struggle to focus on anything else, which may appear problematic to a neurotypical person.
They provide us with a sense of comfort, fulfilment, and retreat from our overwhelming surroundings. Blocking us from our special interests can feel like depriving us of oxygen. The more you stop us engaging with our special interest, the more distressed we become.
When I was an inpatient my special interest was writing everything down in my diary. I wrote constantly. Four weeks into my admission my diary was taken from me because it had a ring binder.
This was hugely detrimental to my mental health and actually resulted in me being sectioned. If it absolutely had to be removed it should have been removed on admission, not four weeks later when this was my established coping strategy and a crucial part of my routine.
I would never have used it to cause harm because it meant so much to me. This risk could have been weighed up and a possible reasonable adjustment made, e.g. be allowed it in my bed-space and not elsewhere to avoid any potential risk to other patients. The calming effects of our special interests and the detrimental effect of having them removed needs to be considered.
If my needs as an autistic person had been met, my being sectioned may have been avoided.
Another difficulty for us is the sensory environment.
Our brains focus on everything all at once so we struggle to filter out noise. This can be really distracting, exhausting, and even painful. We can feel overwhelmed and struggle to function if our senses are overloaded.
It’s important to note that this doesn’t just have to be in what neurotypicals would consider a loud room. They may consider the room quiet but for us noises like someone whispering, the clock ticking, or someone coughing can cause sensory overload. Minimising stress caused by this needs to be considered in a psychiatric unit.
We weren’t allowed in our rooms during the day but being allowed in our room at various points throughout the day to recharge and get away from the noise or chaos could significantly enhance our functioning and mental wellbeing. It’s not only noise which affects our senses – it could be the feeling of the duvet we are not used to against our skin which could be preventing us from sleeping. Infection control is important but allowing the autistic person to have their own duvet or blanket in their bed space could mean undeniable progress for their mental health.
Do not underestimate the importance of staff knowing that the person is autistic. Many do not realise that you cannot tell if someone is autistic just by looking at them, contrary to what autism stereotypes will tell you. I think staff knowing this can impact the way they respond to concerns or behaviours, providing they have some sort of understanding of autism of course.
I know that sometimes I get upset over things which wouldn’t bother others and this can be exacerbated in the intense emotional environment of a psychiatric unit.
That’s why it’s so important to accommodate our needs as much as possible. If an autistic person is feeling extremely anxious and overwhelmed their progress could be hindered, meaning they may be detained for longer than necessary.
Ultimately, I think staff need to be prepared to implement reasonable adjustments for everyone who needs them – not solely autistic people – whilst maintaining a safe environment and good quality of care for other patients.
Some things can’t be adjusted but many can, and this can make a world of difference. Even the small changes.
Emily Katy (@itsemilykaty on Twitter) is studying Mental Health Nursing and uses her experiences of being an autistic person in the mental health system to advocate for change.