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Post-diagnostic support for autistic adults

In this article Hilary Hart, Senior Occupational Therapist at NHS Tayside, describes a post diagnostic project for autistic adults which aims to reduce mental health difficulties. 

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Author: Hilary Hart

Post-diagnostic support for autistic adults

There had been a significant increase in referrals to our Community Mental Health Team (CMHT) for the assessment and intervention with clients with a recent diagnosis of autism spectrum disorders (ASD), who were also experiencing mental health difficulties. These individuals had difficulties with daily living activities, as well as complex communication, cognitive and sensory processing difficulties.

This was an unfamiliar area of practice for me and so I contacted my Allied Health Professional (AHP) colleague, Susan Munro, a Speech and Language Therapist (SLT), to see if we could identify how best to work with these individuals. Susan was involved in the process of diagnosing ASD amongst adults, and had lots of experience working with this client group.

Following some brainstorming, consultation with the CMHT, a review of current literature and liaison with local ASD services, we decided to run a group providing education, guidance and peer support to adults with ASD. Whilst I did not have a lot of experience working with clients with ASD, I did have a wealth of experience when it came to establishing and facilitating groups.

I am a passionate believer in group work and the peer support which people can experience within a group. Groups also offer an effective use of time and resources. We decided to share the group materials with other members of staff, to increase awareness and understanding of ASD and mental health difficulties.

Aims of the group

The project had five overall aims:

  • improve participants understanding of ASD
  • examine some of the difficulties they face in communication, sensory processing and cognitive processing
  • guidance on coping strategies and OT/SLT measures
  • identifying support networks in participants communities
  • and peer support.

The group was structured as a 6-session programme, and each session lasted 1 hour 30 minutes. To make the sessions “ASD friendly”, each was split into the following 30 minute sections:

  • an information session about ASD and strategies
  • activity break – this was used as a “breather”, allowing participants time to process what they had just learnt in the information section 
  • activity break – this was used as a “breather”, allowing participants time to process what they had just learnt in the information section 

The information sessions aimed to increase participants understanding of their diagnosis, and explore some strategies they could adopt to overcome difficulties. For example:

  • devising individual planners to create structure and routine to their days
  • home visits to determine environmental issues, such as lighting and room layout/design
  • and sensory profiles to help them understand and address their own sensory needs, e.g. smells, noise etc

A variety of activities were chosen, including relaxation sessions and board games – one of the group’s particularly enjoyed quizzes during the activity breaks.

The group ran once a month, ensuring that the participants did not feel ‘rushed’ and had time to assimilate the information and act upon strategies identified during the sessions. Alistair Serrils, a Social Work Support Worker, was also involved in the project, as he had worked with a number of clients with ASD and wanted to learn more about the condition and how to implement best practice in his own work.

Outcomes

Questionnaires were completed by participants at the beginning and end of the 6-week programme, to evaluate the group’s effectiveness. The questionnaires gathered information about participants understanding of ASD and their views on the group. A focus group approach was also used at the end of the programme, allowing for a more open and in-depth discussion of the programme.

The questionnaire results showed that individuals’ understanding of their diagnosis had increased, and that they were more frequently using strategies to help them cope. The SLT and OT strategies suggested to the group resulted in an increase in activity levels, motivation and communication.

Feedback from the focus group indicated that participants had really benefited from peer support, and the biggest theme was the shared experience of having ASD and of “not being alone”. 

“I felt that what helped was hearing other people talking about how they felt, and how they coped with this condition. It made me feel it wasn’t just me who is like this.”

“I find it hard to speak about how I feel.  I know how I cope, but everyone is different.  But it was good for me to know I wasn’t on my own.”

“The group has opened my eyes, so that I now understand what has been affecting my life for all of these years and answered a lot of my questions. I wasn’t given answers when I was younger.” 

Informal feedback from CMHT staff has been very positive; members of the team now feel they have more knowledge and understanding about working with this client group, and report improvements in their clients’ mental health and wellbeing.

A second group ran in 2015, and across both groups, 7 people have now moved on from the mental health services. A monthly support group has been set up to enable participants to meet after the programme finishes. Both written and verbal feedback identified peer support as the main benefit of the programme, and the support group allows them to continue to meet and offer support to one another.

Further reading

Dunn, W., 2009. Living Sensationally. Jessica Kingsley Publishers

Date added: 22 February 2016

 

 

Comments

Wed, 02/03/2016 - 14:51

Hi Hilary,

I am seeking advice on the support and employment of those on the autism spectrum, whether that be people already employed by my company, or those suited to particular tasks that we have. What I'd like to do is ensure that the support structure required is in place ahead of reaching out to people and for us to have as much of an understanding as possible if and when questions are asked. 

Are there ongoing support groups and/or facilities for adults with autism? If you could give me some information on this I would be grateful. 

 

Thank you for your time

Regards

Mat 

Mon, 07/03/2016 - 13:42

Hi Mat

You may find some other Network Autism material more useful, as Hilary's article doesn't really focus on employment. 

The following articles may be useful reading for you and your employees:

Supporting an autistic person in employment

An autistic guide to succeessfully maintaining employment

You may also want to post your enquiry in our Employment Discussions Forum, so that it reaches a wider audience.

The NAS website also has a range of information for autistic adults on employment issues and some information and advice for employers

The Autism Services Directory may also have details of support groups in your local area.

Many thanks,

Chris