Why is timely support so important?

Discovering we are wired differently can be wonderful. Suddenly so many of the things we didn’t understand about ourselves make sense. Sometimes this gives us ideas for how we might want to do some things differently, while at the same time giving us the confidence to embrace other things we may have hidden, worried they mark us out as ‘different’.

While euphoria and relief are quite common in the days and weeks following diagnosis, all too often people also report a variety of negative reactions alongside. For some of us, this might be short-term confusion, for others it can be a longer process to acceptance as we struggle through these ups and downs. For some it can lead to identity crisis, depression, even suicide.

Some people have described this experience as very like a bereavement, others prefer “rollercoaster”. Regardless, conflicting, and challenging emotions can crash into each other multiple times a day:

  • Depression
  • Anxiety
  • Resentment
  • Euphoria
  • Excitement
  • Anger
  • Denial
  • Hope
  • Relief
  • Fear

The post diagnostic experience is rarely straightforward, so access to timely support is vital. Even for those with supportive family, there is often another layer of help needed – at the end of the day, our family and friends are rarely qualified specialists often knowing little about this neurodiversity themselves.

Some people talk about this period simply as needing to ‘find their tribe’, others feel they need some form of practical, specialist support, whether that is therapy, access to training, or support when negotiating workplace accommodations. Whatever it is, finding such people can be more than a little tricky.

Even a brief trawl of the Internet reveals the process of both diagnosis and on-going support is problematic in most places, whether that is due to under resourcing, poorly defined care paths, cost of support, a restrictive cultural view of Autism – or a mixture of all of these.

So what could support look like?

In the UK, the National Institute for Health Care Excellence (NICE) has created guidelines:

  • Following referral, assessment should commence within 3 months
  • Diagnosis should be accompanied by a personalised plan, recognising the individuals’ strengths as well as their challenges – which should be reviewed as circumstances change
  • A carer should be assigned to help coordinate the care/support plan – where needed
  • A discussion about opportunities for ‘age-appropriate, psychosocial interventions’
  • The identification of environmental factors (social and physical) which create challenges for the individual, then help identifying accommodations

Note: In Quality Statement 6 it specifically states that medication should NOT be viewed as a treatment plan for ‘core features of Autism’.

Even with this UK guideline, the backlog of referrals in the UK is so great and resources so few, the wait for assessment is realistically nowhere near 3 months, rather it is between two to three years depending on one’s postcode.

Once in the system, a post diagnostic ‘debrief’ is sometimes offered as part of this overall process, other times it is offered as a separate service where the cost can be prohibitive or delayed. This debrief can sometimes be the only support on offer to a newly diagnosed adult.

So, while a good start, these guidelines are just that ‘guidelines’ and for a variety of reasons implementation can be very patchy. Unfortunately, all too often post-diagnostic care paths are poorly defined and so ‘pointers’ remain generic, rarely tailored to the needs and interests of the individual.

So where do we go?

Good places to start are your local Autism and Neurodiversity charities. Often set up due to care path gaps, they can sometime offer a list of recommended resources. Perhaps more relevant to this question, they can afford access to a group of people who have been through the diagnostic experience themselves. Given the nature of Autism, local children’s support group will undoubtedly have Autistic parents connected with the group who may have used the sort of local service providers you are looking for. In my experience such groups are more than happy to offer help in any way they can. And even if it transpires there is nothing in your local area, or at least nothing you feel fits your immediate needs, contacting organisations further afield can give you pointers to online service providers as well as advice about books and other websites which might be of use.

A word of caution – always look carefully at the mission statements of organisations and the ‘About’ section of websites. It is unfortunately the case that even the most well-meaning can have a view which doesn’t sit well with you. For example, it is still the case that some view Autism as a disaster and something to be eradicated or cured and some websites and resources reflect this. The Internet, while wonderful in lots of respects, is also unfiltered, and you will quite quickly come across people and organisations who intentionally or otherwise view Autism so negatively you will have to work very hard to get anything other than a bad feeling from their content. While often far from intentional, the emotional impact can be staggering. Importantly, if you find yourself reading something which makes you feel worthless or inadequate, consider the source and think about trying something else. While it is indeed helpful to find your tribe, and the Internet can be an excellent way to do this, it isn’t all great.

Realistically any ‘debrief’ you are offered will only be able to cover so much, so having somewhere to go back to as new questions arise can be very helpful. The Internet is an obvious place. But what questions to ask? What do we even need to know? And how do we make sure we read helpful ‘stuff’?

I believe, while the debrief ought to provide targeted connections to services appropriate to address immediate concerns, as time goes by there are likely to be many more questions, as well as new challenges which crop up. Ideally such a session would also provide resources about some of these issues and provide guidance for where to go next when the time comes. Hoping we will just get back in touch is not good enough – the waiting times and the cost implications are frequently prohibitive.

Autilistic resources aim to fill this gap, currently The Undercover Autistic: Navigating Your Diagnosis deals with many of these questions in broad terms, but there are two additional resources currently in development – check back soon.