9. Mental Health
Approximately 30 per cent of participants raised the issue of mental health and did so under each of the strategy's outcomes, so that mental health is clearly viewed as central to the realisation of the strategy's overarching vision. As with other themes, a number of subthemes emerged within this section, including training and awareness and the importance of appropriate mental health support.
Autism and mental health
A large number of participants said autistic people's mental health could be improved if professionals, across all relevant sectors, were more aware of and better trained in autism. Participants emphasised the extent to which mental health issues can affect autistic people, with one saying that more than 70 per cent will develop a mental health issue at some point in their life. A large number of participants said, in general terms, that more needs to be done to improve autistic people's (children and adults) mental health:
- 'Mental health issues also need addressed and a better system to help autistic people who are also facing mental health problems'.
- 'It is known that a high percentage of people with autism spectrum disorders will develop mental health issues later in life. Give access to mental health services to children when parents feel it would benefit the children'.
- 'More awareness of autism and health and high risk of mental health problems'.
- 'Improve facilities for those with mental health issues'.
- 'The health and mental health services need to be more aware of the fact that we don't perceive the world the same way. This means that standard assumptions about how issues would be described don't work'.
- 'Increase support in…health care (and especially mental health) to support individuals learn to manage their challenge'.
- 'Provide a better mental health service'.
- 'Make more support available i.e. access to mental health teams etc. more available with less waiting times'.
Some participants discussed the appropriateness of support being provided to autistic people within mental health services. As one described it: 'I feel like I have no say in the mental services made available to me, I am treated as though I am not autistic and the process should be different, there is no separate pathway for autistic mental healthcare and there should be'. Another said 'AUTISM IS NOT A MENTAL HEALTH ILLNESS. There needs to be a national recognition that autism is not in any way, shape or form a mental illness/concern'. A number of participants agreed with the view that autistic people's mental health issues should be dealt with in an autism-specific service. One participant said the NHS should establish a dedicated autism department to deal with 'diagnoses, mental health, family support and continuity through from toddler to adult'. Another said autism should not be 'amalgamated within the area of mental health but treated as a separate entity in its own right with its own ring-fenced budget'. For others, there is a danger of autistic people 'falling between' mental health and learning disability service in terms 'of meeting criteria for support'; the 'gap in services means that people with autism are only able to access help when they also develop a mental health illness'. Working in 'silos', however, represents a 'systemic barrier' and the 'lack of response to autism in its own right' means people fall between gaps and cannot access services.
Training and awareness
Participants were generally in agreement that more needs to be done within mental health services to improve understanding of autism. For many, this means better training so that mental health professionals have 'good' and 'up-to-date' knowledge of autism and are therefore better placed to support autistic people. As one participant put it:
You need to make sure mental health services are accessible and that psychiatrists understand that autistic people may need to access services differently to non-autistic people and that they have been trained adequately to recognise and be understanding to us. At the moment mental health services are a one size fits all where, if autistic people don't fit the decided outcomes or find it too difficult to attend for a period of time, your case is closed.
Participants spoke of the mental health issues many autistic people face, including anxiety and depression. One participant said families should not have to wait until a crisis point before services intervene. Another spoke of 'struggling' every day with 'anxiety and disorientation caused by mood disorder and difficulty managing basic tasks'. Others, too, spoke of how 'high' anxiety prevents or inhibits them from doing otherwise 'ordinary' things including 'going for a walk to do some shopping', speaking and meeting with other people, and working. One participant spoke of 'just trying to come up with my own ways of improving my anxiety and stress levels, taking cues from other peoples' suggestions, reading about various therapies, and my own observations'.
Lack of awareness whether in mental health services or elsewhere can also exacerbate existing mental health issues or give rise to them. Some participants said such lack of knowledge and understanding means mental health professionals tend to focus unduly on the particulars of the autism presentation to the neglect of the person's mental health. As one put it, professionals should avoid simply 'attributing distressing symptoms such as anxiety, as inevitable accompaniments to autism'. Some participants said the tendency to reduce mental health issues as natural by-products of autism mean some autistic people were being 'denied' services and support – poor mental health is viewed among mental health services as 'collateral damage of ASD'. As one participant said, 'when someone's identified as being on the autistic spectrum, don't just sort of say "right-oh, off you go then." See if they suffer from anxiety and/or depression, as so very many of us do, and what kind of help we might need as a result'. The gap between the theory of services being 'autism friendly' and professionals 'understanding' autistic people is, in practice, often 'immense and unacceptable'.
Access and support
A large number of participants spoke of the difficulties they have faced in accessing, in particular, Child and Adolescent Mental Health Services ( CAMHS). One participant said CAMHS is 'collapsing under the huge waiting list and lack of staff, counsellors and funding'. Another said they waited 15 months for a CAMHS appointment, with little or no interim support provided to their child or their family. Another parent said they waited six years for their son's diagnosis, having initially being turned away by CAMHS. Others spoke in general terms:
- 'Easier access to CAMHS'.
- 'Easier and quicker access to CAMHS…'.
- Quicker access to mental health services for children'.
- 'Improve mental health services for children on the autistic spectrum'.
- 'Easier access to CAMHS – WAITING TIMES ARE EXCESSIVE AND MANY PARENTS ARE JUST LEFT TO STRUGGLE ON'.
- 'Increase access to CAMHS service'.
- 'Reduce waiting lists for CAMHS referrals'.
A number of participants spoke of their negative experiences of CAMHS, some of which again came back to lack of understanding and awareness of autism. Participants spoke of 'negative' experiences, being 'fobbed off' and 'shoddy treatment'. One participant said that when their son was 'finally' assessed, CAMHS took 'five minutes to tell him and set him away with a pile of leaflets. We heard nothing more about how they were going to help him deal with his diagnosis'. Another spoke of attending her son's consultation, during which she was told 'three times in an hour that he should be there alone'.
Alongside better and more training for mental health professionals, a number of participants said more funding is needed for mental health services:
- 'Fund mental health services to help them deal with anxiety and depression'.
- 'Ensure the mental health services have enough funding to provide the level of service required'.
- 'Provide more money for statutory services to develop a comprehensive service in each health board for diagnosis and management of autism spectrum disorders and consequent mental health problems in education and for adults'.
- 'Invest in Mental Services including CAMHS and LD CAMHS'.
- 'Huge investment in CAMHS to support an effective diagnostic process and ongoing post-diagnostic support'.
What is important is that any support is tailored to the individual, with 'set manageable aims' to ensure each autistic person can achieve positive mental health outcomes. Such support would potentially reduce the levels of anxiety experienced by people with autism in coping with the challenges they experience and prevent many being pulled unnecessarily into mental health service. Participants agreed that early intervention is important to positive mental health, as is better coordination between services. As one said:
As the parent of a young female adult with ASD (Asperger's) there needs to be a far more joined up, holistic approach in addressing mental health. Mental health issues, in my experience, are emerging early in childhood. Too often they are not recognised and dismissed as traits of autism. Adolescence can be a particularly traumatic time and better mental health support is required at that time and must continue into early adulthood.
Give them more support initially, especially for the young person within a social setting like school. There are numerous young people within any given school with autism yet very rarely are there groups set up for these people to improve their social skills. This in my experiences of working with young autistic people leads to them being incredibly isolated and may cause mental health problems.
Peer or community support was also recognised as an important mechanism for supporting autistic people, as was the availability of resources that 'promote positive mental health and wellbeing', which needs to be 'better signposted and accessible'. One participant said the most important thing for their 'mental and physical health has been finding a peer group of other adult autistic women'. By contrast, another participant said 'socialising is a big use for a lot of people with autism' and 'most do not want to be integrated or participate in society as they just want to be left alone. Forcing them to participate causes mental health issues'. Some participants said a personal worker would be more appropriate, who is 'autism trained' to talk to the autistic person at times of 'high anxiety'. Such intervention would, in turn, reduce the 'need for medications and emergency support from community psychiatric nurse services'. One participant said more autistic people should get blue badges in light of the fact that the anxiety which arises from 'parking and shopping can be just as debilitating as a physical disability'.