Many autistic people have mental health difficulties throughout their lives which can make their lives more difficult. Yet, there are few mental health treatments for autistic people, particularly once they are adults.
A systematic review and meta-synthesis was conducted to better understand what it is like for autistic adults when they try to get help.
This project involved a team of autistic people, researchers and mental healthcare professionals. It was initiated by the Autistica Mental Health Study Group. Authors and link to the full article "We Have to Try to Find a Way, a Clinical Bridge” - autistic adults' experience of accessing and receiving support for mental health difficulties: A systematic review and thematic meta-synthesis can be found below.
Aims
We brought together existing research studies on what it is like for autistic adults to access and use mental health services. The aim of the current paper was to summarise what these studies found. This is helpful because it shows what the research so far is telling us.
What we did
We searched the autism research literature to identify any relevant studies. Studies had to report the views of autistic adults, their parents or healthcare professionals (like doctors or therapists). Studies had to use interviews or small group discussions to find out about their participant’s views. At first, our search identified over 12,000 studies. Of these, 38 studies were relevant to our topic. We read these studies in detail to draw conclusions about what these studies found.
What kind of studies were included
We looked at where studies were done. We also looked at what sorts of people took part. This helps us to understand whether existing research is missing anyone.
Most of the studies were done in the UK, the US or Canada. There were few studies in the rest of the world. All studies looked at autistic adults’ experience of mental health care in some way. Some studies focused on specific therapies or places where the treatment happened, for example in a hospital. A few studies looked at specific types of mental health difficulties, such as eating disorders, anxiety or self-harm.
Some studies focused on specific groups, like autistic young adults or women. Only a few studies included autistic adults who also had an intellectual disability. Most studies did not say what ethnicity people were. Of those who did, few studies included people, who were Black, Latino, Asian or from ethnic minorities.
How did autistic adults feel about mental health services?
We organised the views shared by participants across studies into three different themes.
Lonely, difficult service experience
Sadly, most autistic adults described bad experiences with mental health services.
They reported lots of things that got in the way when trying to get help. Some did not know their problems were related to mental health. So, they did not know they could get help from mental health services. Others did not know how or who to ask for help. Many mental health professionals they saw did not know much about autism and did not try to make things easier for autistic people. Professionals said they needed training or extra resources to better help autistic people. Usually, they did not get these.
For many autistic adults having difficult experiences with services made their mental health worse. Often, they had to rely on family and friends or medication, because there were no other options.
Complexity needs flexibility
Autistic people saw their autism and mental health as separate, but intertwined. Being autistic could have an effect on mental health difficulties as well as on what autistic people required from services. There were various suggestions to make treatment easier and better for autistic adults. Therapists might need to change the way they communicate. They might also need to change the treatment to fit with certain thinking styles or difficulties with emotions. Changes to the place where treatment takes place might reduce sensory overload. Many autistic people like to know what to expect and find sudden changes difficult. A clear structure could make treatment more tolerable for these people. Autistic adults might take longer to get used to treatment and to get better. They might need more sessions, longer or shorter ones, or more breaks.
Recovery might look different in autistic individuals. Goals and expectations for treatment might be different. Mental health difficulties may have knock-on effects on other areas of autistic adult’s lives. Mental health services should link with other services to better support autistic adults.
Services should try to be as flexible as possible. They should consider what each person needs, rather than treating all autistic people the same. They could involve other (trained) autistic people to help with making sure treatment is right for the person.
Collaboration and empowerment
Participants said it is important that the autistic person could trust their therapist. Autistic adults valued working with the same person rather than lots of different professionals. It was also important for autistic adults to be involved in decisions about their care as experts on their own experience. Those who found treatment helpful felt they were in a better place to manage their mental health on their own in the future.
What this means for services
Our paper provides clear suggestions about how services can improve. Some suggestions are simple and would not take a lot of time or money. Other suggestions are more complex, and will require more money, training and support for professionals. Also, services need to become more flexible, so they can be more helpful for autistic adults.
Next steps
The current paper reports on research about autistic adults' experience of mental health services. Future research should ask autistic adults with good experiences, what worked for them and why. We also need more research with groups of autistic adults who have not been involved so far, like people from different ethnic groups. We need to test whether the suggested changes improve services for autistic people. It could also be helpful to develop new autism-informed mental health treatments.