The Scottish Strategy for Autism: engagement analysis

4. Diagnosis and Post-Diagnostic Support

A majority of participants raised the issues of diagnosis and post-diagnostic support and did so under each of the strategy's outcomes. Participants clearly believed diagnosis and appropriate post-diagnostic support are central to realising the strategy's vision for autistic people, their families and carers. As in other sections, subthemes emerged from the evidence which touched on these issues, including the importance of early diagnosis, better and more consistent support, and support for the wider family.

Diagnosis

Participants were clear in their view that more efficient diagnosis is of key importance for both children and adults. Several participants raised this issue in general terms:

• 'Early diagnosis'.
• 'Early and timely diagnosis'.
• 'Offer diagnosis at a young age'.
• 'Early diagnosis and support'.
• 'Early diagnosis even if symptoms are mild'.
• 'Early intervention, assessment and diagnosis'.
• 'Better and quicker diagnosis'.
• 'Quicker diagnosis'.
• 'Quick pathways to diagnosis'.

For one participant the diagnostic process was 'far too difficult and arduous', while the diagnosis itself is not always automatically 'flagged' on medical notes, which can cause additional problems when engaging with services. Participants described the long waiting times for a diagnosis and the diagnostic process as 'limbo', 'mystifying', and 'simply as a black period that we had to deal with behaviour at school and home and [that] were very difficult to manage'. For this family, following the diagnosis, which took almost four years, 'all the dynamics changed for the better'. One participant said the 'criminally long' waiting lists for diagnosis can leave individuals and families open to 'exploitation by the private sector'.

As can be inferred from the paragraph above, early diagnosis (or the lack of it) can impact on other areas of a person's life. One participant, for example, said more autistic people would be able to work if they had been diagnosed earlier. Late diagnosis, coupled with inappropriate support or none at all, has meant such people have 'developed crippling anxiety, depression and other issues which means they are probably unlikely to ever work now, which is very sad'. Another participant said it is 'well known' that the sooner children are diagnosed and supported, the better they are able to cope with their day-to-day life. Waiting long periods for a diagnosis can also affect a person's mental health. One participant said they are now in their fourth year waiting for a diagnosis, despite having already had several breakdowns and a tendency to self-harm. Family life can also be impacted by diagnosis. As one participant said, early diagnosis is 'essential' because it:

Allows families, as well as the individual, time to 'accept' the diagnosis, learn how to manage the condition and figure out how the nightmare that is 'the system' works (or doesn't as the case may be!). Self awareness, self monitoring leading to self help are essential for independence. This takes many years to achieve so the sooner the individual and family start the journey, the more chance of success.

Another participant touched on similar issues and said quicker diagnosis is essential because diagnosis is often the gateway to services and support:

Being the mother of a teenager with autism, I have now waited over 18 months for my daughter to be tested, although her consultant is 99.9% sure she has Asperger's, we still require the formal testing and won't have access to services/support until after the diagnosis. It's been a challenging two years trying to support a teenager with autism with no real knowledge of the condition or support available which has been extremely stressful and difficult for my daughter and the family. We haven't really had a happy, healthy life for a couple of years as a result of trying to understand and deal with her and if we had been given the diagnosis early on then I am sure we would have been leading happier, healthier lives.

It was suggested there is a need to move away from a sharp focus on diagnosis itself towards ensuring better support is in place for the person and their family. One participant, while recognising the role of diagnosis, said better pre- and post-diagnostic pathways are needed, which should include 'automatic screening for common co-morbidities…such as anxiety, depression, joint and muscular-skeletal issues and gastric/digestive issues and sleep problems'.

Several participants raised the issue of diagnosis for adults. As one said, 'adults with autism exist, and late diagnosis is common, especially for women, ignored and not recognised'. Some participants noted that adult diagnostic pathways do not exist in their area. One recalled the difficulties they encountered trying to obtain a diagnosis:

Adults and the 'higher functioning' people with autism seem to be having it harder trying to get a diagnosis as so little is known and being fobbed off with an 'I don't know' or 'what is the point' or, 'why bother? we can't treat it or do anything about it!', is just so frustrating it can't be put into words. I had two wrong/inaccurate mental health diagnosis spanning thirty years and it was only my constant persistence that eventually persuaded my current psychiatrist to admit me for proper diagnosis. Now I have an accurate diagnosis, it is clear that thirty years with a bad diagnosis went a long way towards causing my actual problem. Even so, I'm still waiting for an assessment to get to the root of all my issues.

Some participants said there is often a presumption that diagnosis is not needed for adults because they have 'managed' thus far in their lives. But people should not be 'refused a diagnosis of autism because they have an exceptionally high IQ, are aged over 50 or are female'. One participant said people are 'slipping through the net due to being "high functioning"', while another said support tends not to be available for autistic people who are 'functioning' or do not have a learning disability. Another participant noted the 'lack of equality' between adults with learning disabilities, who 'appear able to access support', and adults with Asperger's, who cannot.

Several participants touched on – again – the importance of proper training and awareness of autism among the professionals involved in a person's diagnostic journey, including primary care staff. One participant recalled how a GP assumed 'that being autistic meant I had learning disabilities…He took my diagnosis with a pinch of salt because I was able to make eye contact'. Another said there is a general lack of understanding and awareness of how adults are affected by a late diagnosis. Professionals need also to be aware that autism can exist alongside Down's Syndrome, and that autism in an individual with Down's Syndrome is not 'atypical'. Even though autism in someone with Down's Syndrome becomes the primary diagnosis, given its greater impact on development and support needs, this is often not acknowledged and the required support fails to materialise.

Some participants raised the issue of ensuring services are properly funded. As one put it, 'much more funding and resources are needed towards recognising, assisting, assessing, diagnosing and supporting individuals with autism'. Another suggested establishing a 'specialist neurodevelopment psychiatry multidisciplinary team' in each area to 'assess, diagnosis and provide skilled [support] to adults on the spectrum who currently get minimal, if any, help…Be brave enough to fund proper Neurodevelopmental Services in all adult mental health services in Scotland'.

Support

While participants were clear about the importance of more efficient diagnosis for both children and adults, they were equally clear that diagnosis has to be accompanied by early intervention and support. Having the right support available at the right time can 'remove some of the stress that people with autism and their families often experience', which can be 'massive' for them. Again, several participants spoke in general terms about ensuring early support and intervention:

• 'Improve support around diagnosis'.
• 'Better post-diagnosis support'.
• Clearer pathways to...post-diagnostic support'.
• 'Quicker support following diagnosis'.
• 'Improved support following diagnosis'.

Some participants recalled the difficulties they encountered accessing appropriate post-diagnostic support. One said diagnosis 'means very little more than a piece of paper'. Another said, 'don't just give us a diagnosis then leave us to it – don't keep brushing us off with pathetic excuses like it's a phase she will outgrow. Help us' - support should begin, not end with diagnosis. One participant recalled how they received some help upon diagnosis but otherwise 'had to go and look for help and advice…Families are often left to search out for help and then it can take a long time for the help to be put in place. Diagnosis is the start of the process'. A parent participant, whose son was diagnosed in his twenties, said the diagnostician simply 'sent them away with a letter and a few websites to look at'. Another parent raised similar points and asked: 'might it be an idea that after diagnosis you get some type of support for a period? Like happens with a diagnosis of dementia?' Some participants noted the contrast in support available for those with physical health needs and those with autism, who are often simply left to 'work it out' for themselves:

If I had a heart attack or was in a car crash the whole system would be buzzing around me fixing things and being fully funded. How many more "car crash of lives" do autistic people have to live and die before the government takes action to enable them to live a healthy life?

Several participants raised the issue of ensuring support is available to autistic adults, including mental health support. Despite being deemed 'high functioning', people diagnosed with autism in adulthood are 'statistically the most at-risk demographic when it comes to depression, anxiety and suicide – this group has the lowest life expectancy due to this, and is also often the most overlooked group due to their apparent capabilities and independence'. One participant recalled their own experience and the absence of support following their diagnosis:

I was diagnosed as an adult in 2016 and in the weeks beforehand I had to push to be given information as basic as how long the appointment would last. Once I had the diagnosis I was (verbally) given the name of a local support organisation and that was it. There was no information, no follow up, no advice on how to deal with the psychological impact, no help with any of the problems that had led me to seek diagnosis. I was lucky enough to find informal support through networks of other autistic adults - many of whom had been through the same thing - but this shouldn't be left up to luck. Almost 80% of autistic adults suffer from a mental health problem, and the suicide rate amongst autistic people is nine times higher than in the general population."

Other comments on the support, or lack of it, available to those diagnosed in adulthood included:

• 'A lot of the time especially for adults there is very little information or support after diagnosis'.
• 'Ensure full support is available for all autistic people, especially adults'.
• 'We need more support as adults. Those of us who were not diagnosed as children (and there are a lot of us) often end up going our whole lives without support because there simply is not enough support for autistic adults'.
• 'We need support for adults and we need people who are actually able to provide it'.

Participants were in agreement that support should be consistent and available as needed. Support needs to be available to help people 'work through what the diagnosis means for us, especially for those of us diagnosed in adulthood - how to understand its impact on our life to date'. Parents and families likewise need support to understand autism and to 'equip and empower them, and support them with the issues they face over their time'. Support should be 'extensive and intensive, from diagnosis ( i.e. nursery) then school, further education and into the work place'. It is necessary to look at the whole person and their life's journey so that support plans are created with 'constructive' input from 'psychologists, psychiatrists, social workers, government employees in jobcentre, education staff and GPs who have specialist knowledge of autism', to ensure autistic people are more likely to 'reach their potential, gain employment and be active citizens'. It is also important to 'profile' the individual's strengths, as well as their difficulties, to ensure any support is properly targeted and balanced, giving the person opportunities to put their skills to use.

Several participants offered particular suggestions about what type of support could or should be available. One said children should be taught things like 'sarcasm [and] social cues', while parents should have more training and courses on offer to them (see below for more on family support). A number of participants emphasised the importance of making proper use of the SIGN guidelines on the assessment, diagnosis and interventions for autism spectrum disorders, to help 'autistic children with behaviour issues…regulate emotion by being more autonomous over their own lives'. Some participants touched on the importance of autistic people being able to access peer support both during and after diagnosis. As one put it, one of the 'most valuable things is to meet other people with similar experiences, who've faced similar challenges and in many cases developed strategies for dealing with them'.

Several participants said there is a general lack of information on what support is available and in which areas, with one suggesting the creation of a national database of services, which people should be made aware of and supported to access during the diagnostic process. As one participant said, 'having to find services or support for specific things is very stressful and trying to find out what is available locally is difficult. This is detrimental to the mental health of the person with ASD and their family'. Information on the support available needs to be made known to the individual and their families 'without question', be 'transparent' and 'up to date'. A 'properly manned helpline with trained people' could be useful in directing people to sources of information and support. A 'named person' could also act as a conduit for information, advising individuals and their families on the 'benefits available, training for carers, support for the family, and advocate when the caring role becomes too much'. Such a person could ensure the family journey is 'joined up' and counteract the tendency among professionals and services to work in silos or isolation.

A few participants said the only way to ensure appropriate support for autistic people is through the introduction of autism legislation. As one said, legislation is 'required' if health boards, locals authorities and integration authorities are to be 'more accountable in relation to their commitment to autistic individuals and those who may be autistic ( i.e. seeking or awaiting a diagnosis)':

Currently it seems too easy to sideline or ignore this client group in the face of ever increasing financial and resource pressures. It is seen as an 'optional extra' when their focus is on trying to sustain traditional services (adult mental health, CAMHS, statutory social work responsibilities).

Family support

As has been seen, participants highlighted the issue of support for the wider family unit. As one put it, the impact of autism on 'neurotypical members of the family is also very challenging, especially on siblings – not enough support or understanding what it's like mentally and emotionally living with such a complex condition'. Another participant, whose family received no support, said: 'my husband works nights and comes home to meltdowns in the morning, the big sister gets thumped by the autistic sister and I have to try to cope with it all morning and night. Takes its toll on us all'.

It is important that families know what support and services are available for the whole family, including the autistic individual. Families need 'easier contact' with professionals and services as well as appropriate 'signposting'. This may be particularly important in 'small villages' and rural areas, where often people 'tend to not even hear what is on' or available. Services need to consider the whole family when assessing support since autism can affect everyone in a household. One participant touched on the potential problems families may face if they do not receive 'timely and appropriate advice' to support their child with, for example, managing the transition from school to other destinations. Failure or delay in assessing the young person's needs early enough in the transition can mean support is not in place in time for the start of college. Other comments about the need for better information for families included:

• 'There needs to be more information readily available for autistic people and carers, things are very different from each authority and you have to spend a lot of time researching and asking'.
• 'Families need information'.
• 'Provide information to families about what services are available. Include the likes of social media and advertising etc.'
• 'Better information-giving post diagnosis, at the moment the biggest complaint we have is that families and individuals state that they are given out of date information post diagnosis and have to find out a lot of information second hand/through others'.
• '[Rich] Information showing choices and services available towards families who are supporting a loved one with autism'.

Participants were clear that more needs to be done to help families better understand autism. As one said, families and carers need to understand that 'autistic traits can be subtle and that people with [the] same can struggle even when a full diagnostic criteria is met; autism is a fluent difficulty and individual needs vary'. Equipping parents with understanding will allow families to help their loved one with reducing anxiety and improving organisational and practical skills.

Some participants touched on situations where parents or carers have to reduce their working hours or give up employment altogether to ensure support is in place for their loved one. This may be a particular issue where autistic family members have been unable to secure an appropriate post-school destination. Reduced working hours can place additional financial and emotional stress on families. One participant, despite working 'long hours', said she and her husband 'can't afford to eat properly' and manage on a food budget of just £20 per week. For some participants there simply needs to be available 'better' financial support for carers. One, for example, said carer's allowance should either be increased in its own right, or that the earnings threshold should be increased.

A number of participants raised issues about families experiencing social isolation. As one said, 'parents of autistic children can be very lonely and isolated as it be can be so difficult to venture into social situations that is easier just to stay at home and avoid meltdowns, or adverse behaviour, nipping, kicking, socially embarrassing situations'. More practical support is needed to counteract social isolation, including befriender groups for both family members and the autistic person, the availability of more free-of-charge social opportunities, the provision of more inclusive play equipment in play parks and, again, readily available and easily accessible information.

More autism-specific respite should also be available and open to both parents and siblings. This could include supported after-school or Saturday clubs. Having such options available not only reduces the risk of 'stress-related medical issues' for families but also the risk of family breakups, which are not 'infrequent' in this context. Other general comments on respite services included:

• 'Respite breaks for families'.
• 'Space and respite for parents and siblings'.
• 'Respite holidays and breaks for families and siblings'.
• 'Provide adequate support for parents and siblings, recognise respite needs'.
• 'Respite and support for parents and carers'.
• 'Providing respite to all parents of autistic people, regardless of perceived severity'.
• 'By providing support to the people and families who need much needed support or respite to enjoy a healthier life'.
• 'More creative respite for families'.