Patrick Sims, a freelance autism writer, offers some practical advice for professionals and carers/partners who support autistic people with a mental health condition.
Author: Patrick Sims
Supporting autistic people with a mental health condition
Some research suggests that autistic people can experience stress and anxiety for most of their life when undertaking new social activities and not understanding social cues (Myles and Southwick- 2005).
One study reported that over 70% of autistic people also have a mental health condition. The same research found that approximately 40% had two co-occuring mental health conditions (Sims 2011). There are many issues around autism and mental health that need to be tackled and it is impossible to cover all of them in one short article. Therefore this piece will offer practical advice for professionals and carers who support autistic people with a mental health condition.
Mental health indicators
It is important to be aware of changes in behaviour or mood as these can indicate a mental health condition:
- change in normal behaviour
- changes in sleep patterns (more or less)
- changes in diet (more or less)
- changes in mood e.g. unusually short-tempered/aggressive, tearful, apathetic, higher or lower in mood
- changes in energy
- changes in sexual behaviour or inhibitions.
Advice for carers and family
A major difficulty in ascertaining if an autistic person is experiencing a mental health problem is that expressing and identifying emotions and feelings is often problematic (Atwood 2007). When consulting medical advice from a health professional regarding an autistic person, it is important to stress the change or changes in behaviours. Go to the appointment with a tangible list, if possible. GPs are not experts in autism, so they may have difficulty in observing and identifying the changes that you see.
This is particularly true when you have a close relationship with the person you are caring for. For example, be explicit regarding changes in sleep patterns or dietary differences. Can you demonstrate weight loss or low fluid intake? If you find hospitals and/or clinics intimidating and have difficulty expressing your concerns, then write a list or letter to give to the professional (Nyx et al 2011).
Advice for professionals
Making an appointment
Texting/emailing to make appointments is one option that will suit some autistic people more than a phone call or a letter (Kim 2014). Find out if they have a preference for a particular time of day, and make sure that you are on time! If you are late or early this could cause huge anxiety for some autistic people. (Parsons and Sims, 2010).
Below are some suggestions of what to include in your communication when making an appointment when an autistic person and/or their carer:
- state who you are and what you do
- state what the meeting is about
- set out the format of the meeting and a clear agenda
- set out who will be there and how long the meeting will last
- send a photograph of you and advise on where you will meet (Sims 2011)
- provide the name of the receptionist who will be there to greet them
- advice on anything else they need to do on arrival.
The suggestions above are general advice but it is important to ask the autistic person or their carer what information and support they need to attend the appointment, if you are to meet their own specific needs. (Nyx et al 2011).
During the appointment
There are a number of sensory sensitivities to be aware of during appointments. Autistic people may have sensitive hearing or sight which may distract them and affect their concentration:
- arrange a quiet place for the person to wait as busy/noisy waiting rooms can be stressful
- hold the appointment in a quiet room - reduce, if possible, noise from phones, alarms, clocks, lights buzzing, noise from the corridor/next door office etc
- be aware that some autistic people might be sensitive to lights so try not to have strip lighting on
- try not to wear strong smelling deodorant/perfume and avoid distracting clothes or jewellery.
Remember that the autistic person may feel very anxious meeting you and being in a new environment, so give them an opportunity to acclimatise.
Autistic people may have good expressive skills, but have significant comprehension difficulties (Howlin 1997). Ask one short concise question at a time. Give the person extra processing time (Dern and Sappok 2016). If you have to repeat the question use the same wording and tone.
Try not to be literal, for example “take a chair”, and avoid sarcasm/irony as some autistic people may find it confusing. Also, be aware of how questions might be interpreted, for example, “do you hear voices?” - “yes”, would be literally correct.
Autistic people may avoid eye contact as they find it difficult or painful ((NAS 2008). Therefore a lack of eye contact may not indicate depression or anxiety.
If an autistic person is admitted for inpatient care then there are a number of considerations to make, in order to best support them.
An autistic person might benefit from having their own room. If this is not possible it is imperative that they have a quiet and safe space. They may also want to bring their own bed linen due to allergies or sensitivities to certain materials or detergents.
Similarly, certain smells such as detergents, deodorants and perfumes might be quite noxious for some autistic people.
Autistic people may have food allergies such as dairy. Others may not be able to tolerate certain food textures, specific colours of food or one type of food touching another one. These are real issues recognised by diagnosticians.
Be careful with terminology, for example “medication will be 2 minutes” - an autistic person might get quite anxious if it takes longer. Give yourself leeway regarding times, for example “The doctor will be here this afternoon, times vary”. Be aware that medication can affect autistic people differently (Kim 2014, Soraya, 2014).
It is imperative to treat mental health conditions, and also to accept that there might not be a clear diagnosis. For an autistic person to receive the appropriate mental health support it is essential that informal and formal carers to work together to ensure that the autistic person is the centre of their care and support.
Atwood, T. (2007) The complete guide to Aspergers syndrome. London: Jessica Kingsley Publishers.
Howlin, P. (1997). Autism and Asperger syndrome- preparing for adulthood. London: Routledge.
Myles, B. and Southwick, J. (2005, 2ndEd) “Asperger Syndrome and difficult Moments” Kansas: Autism Asperger Publishing Company.
National Autistic Society (2008). Autism: A guide for criminal justice professionals. London: National Autistic Society.
Nyx, E. et al (2011). Self-advocacy booklet- for adults on the autism spectrum. London: National Autistic Society.
Parsons, J. and Sims, P. (2010, 2nd Ed) Advocacy for adults with autistic spectrum disorders. London, National Autistic Society.
Sims, P. (2011). Mental health and autism: A guide for child and adolescent mental health practitioners. London: National Autistic Society.
Soraya, L. (2014). Aspergers Diary – Barriers to effective medical care for autistic adults. June 30th 2014
Date added: 24 May 2018