Day 35: ATUs, autism and anxiety #107days

Louise adopted Day 35, to share some of her thoughts on assessment and treatment units and their suitability (or not) for people with autism. She wrote a blog post to share her experiences and thoughts that is shared in full below:

I am a Nurse who works with individuals with Learning Disabilities. I was heartbroken to read about the avoidable death of Connor. I have worked in assessment and treatment since qualifying in 2009. Prior to this I grew up with a younger sibling who is on the autism spectrum and has complex needs and epilepsy.

I am currently taking some time away from this working environment after experiencing high levels of anxiety and a constant feeling that no matter how hard I try I feel frustrated that I am unable to provide care to those I trained so hard to support.

In this post I don’t wish to dwell too long on my own feelings about assessment and treatment units.  Despite my frustrations I have been so privileged to support lots of amazing people who have allowed me to support them when they are at their lowest. I was able to go home after my shift (very rarely on time) but I was never able to switch off from the frustration I felt.

I don’t believe the system that exists works in favour of those with autism. I believe that many people with autism who are admitted to assessment and treatment units live in a heightened state of anxiety during their inpatient stay. There are various reasons for this and in this post I would like to highlight a just few.

Environment

No matter how the service tries to be welcoming it is still a clinical environment, nothing like home, school or day services. Echoing corridors, lack of natural light, strange noises of people that are unknown to the service user, funny smells of hospital dinners, funny smells of other people, the clattering of the dinner trolley, the rattle of keys. Changing staff every day. Running about from one thing to the next. Screaming, shouting, and swearing. Sometimes it’s too hot and sometimes it’s too cold.

Communication

Ever been on holiday to another country and wished you could understand what was being said? In the inpatient environment non-verbal cues may be different for a person with autism. Staff may use a different regional dialect; the pictures used to communicate may not look like those you are used to.

Use of Seclusion rooms and PET

How terrifying would it be for ‘stimming’ behaviours to be misread as aggression, to be offered medication when it’s not time to take it? To want to stand close to the nurses and carers and smell them and feel them to make sense of whom they are to feel safe? For them to misunderstand this and the next thing you know loud bells are ringing and lots of people are running towards you holding you when you don’t like to be touched?

The seclusion room could be terrifying to a person with learning disabilities yet they are still used within mental health services to maintain a safe environment. Equally the seclusion room could be a welcome escape from the pressures of the ward environment.

Unpredictability/predictability

The atmosphere on the inpatient ward can change at any time. It can become very noisy very quickly. This can be frightening when you don’t know why.

Despite the quick changes in atmosphere the unit has an underlying ‘routine’. If you have autism and you stay on the assessment and treatment unit for a long time could there be a possibility that this ‘routine’ becomes your routine?

Could the change from the inpatient environment to community upon discharge provoke high levels of anxiety? Just as it did upon admission?

If the reason for admission and the prescription of PRN medications is for challenging behaviours linked to stress and anxiety how likely is it that an improvement in this behaviour will be observed within such a pressured environment?

Staff

The pressure placed upon staff in the inpatient environment is high. I have seen high levels of sickness, high turn-over of staff, agency staff coming and going, Low staff numbers and a mountain of paperwork. I have worked shifts when I have been unable to access the bathroom for long periods, get a drink or something to eat until the shift is over (12 hours).

I have worked with lots of very experience staff and have often wondered why do people not understand autism? Information is shared and training has begun to be rolled out to staff, yet behaviours are still misunderstood and seen as (at best) controlling and (at worst) rude and awkward by staff.

Failure to work with existing support networks

I know that when I was in hospital being around those who were familiar to me was a great comfort.

The way the inpatient environment is designed it is difficult (but not impossible) to utilise the existing support from families, support staff, schools and friends.

Due to the complexities of safeguarding/confidentiality staff nurses who are often not experienced in working with families during such a sensitive time often make decisions from their understanding of policy and procedure instead of seeking flexibility in the best interest of the patient.

Call for action

I strongly believe that change needs to happen, for service users and staff alike. With the privatisation of the services used by individuals with complex needs I fear that needs are now at risk of being overlooked. Care packages could be seen as a commodity and levels of support could be at risk of being reduced for all the wrong reasons.

I believe that it is essential that the government provide adequate funding to address the health needs of individuals with autism.

Staffing levels need to be increased and better support needs to be put into place for staff.

Autism awareness and how it relates to nursing practice should be mandatory to all staff.

Work should be done to ensure that established routines and family contact are maintained during any inpatient stay.

Families should be involved in care planning and information sharing.

Lead family liaison Nurses should work with the families to keep communication open and constructive.

Thank-you for reading, Louise

Screenshot 2014-04-23 05.56.04

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10 thoughts on “Day 35: ATUs, autism and anxiety #107days

  1. I found your blog very insightful on the care of those affected with ASD. I have two sons, one eight the other twelve with autism. I worry about their future as do many parents with children with ASD. Thanks again, Scott Garner Ph.D

  2. Make the most of your time out. To do a job like this as well as you can, given the constraints, you need to be healthy, and strong in mind. So good to hear your clear-sighted, well considered views. You certainly know what you’re talking about!

  3. Not sure how, but can you somehow get consulted by organisations such as Southern healthcare trust. In practical terms they can’t be thrown out with no notice but you may somehow be able to influence behaviour.

  4. Thankyou all for your feedback. I really hope that this information can be used in a positive way for people on the spectrum. Sadly the voices of those who have expertise to support people with asc are often not heard and I fear that the need for change will only be heard by large organisations when it comes from in higher managerial positions.

    • Louise, Thank you so much for this. I commented on twitter how helpful I found it. Our Autistic son is presently in a T & A Unit, where he has been since last October. Before that he lived at home. Can I please have your permission to use some of your words and thoughts, as I can’t find my own words to put it in such a succinct manner, partly because it is still so raw and emotional. We have a meeting this week to feedback our thoughts, and it would be so helpful.

      • Hi Caroline please feel free to take anything you need from the blog. Does your son have an advocate? He has a right to one under the mental health act/mental capacity act. I hope the meeting goes well, I would advise making your own notes and requesting the minutes from the meeting for your family as these meetings can be daunting and stressful. I hope your son is home with you soon.

      • Thank you so much Louise – I will indeed make notes. He does have an advocate, but I worry that this person is not that impartial? I will follow up on this, so thank you again for your support. He will be moving on from the Unit to supported living, and this is happening but too slowly, so we are pushing, pushing , pushing. I’m sure we are down as “the parents from hell!”

      • You are not in the wrong to push for what is best for your son. Please do not think of yourself as parents from hell. Instead be proud that you stand by his side at this tough time.

  5. Pingback: Day 53: The golden M (iddle) #107days | #107days

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