Supporting clients with late diagnosis of autism at the Tunbridge Wells Counselling Hub

What is autism?

Autism is a neuro-developmental condition with differences in sensory processing, social and communication interactions. An autistic individual has an autistic neurotype – just different not disordered or less in comparison to a neurotypical individual. Autism is not a disorder or condition. Even the term spectrum is misleading as each autistic individual has their own specific traits and how autism affects their identity and life.

Autism traits and theories of the neurology of autism

Theory of mind

For a long time, autistic individuals were perceived in having difficulties in understanding what another person might think and feel, suggesting autistic individuals lack empathy. In recent years, this has been contested and research has shown that this is not the case. Autistic individuals have an equal theory of mind with other autistic individuals, alike to neurotypical-to-neurotypical interactions.

Often autistic people will put a lot of effort into decoding and understanding neurotypical people and the rules of neurotypical interactions, while this not always seem the case the other way round. Damien Milton has shown in his double empathy problem theory that the challenges of interactions and socialising lie in understanding each other – autistic and neurotypical. Moving away from a model deficit in one group to seeing it more as misunderstanding and -communication issue which needs to be addressed by all participants - neurotypical and neurodivergent.

Attention and autism

Another shift is happening in how the autistic experience is understood with regards to autistic attention. In the past, the perception was that autistic individuals have restricted interests and difficulties to manage change. A new perspective of autism is to consider it as a difference how the brain manages the available attention to tasks = monotropism. Instead of allocating the attention available to a variety of tasks and the ability to easily switch between these as in a neurotypical brain; in an autistic brain the attention is often channeled to the primary task. Meaning the autistic individual can be involved in a task with great intensity and often find enjoyment from being in the flow state or hyperfocus. The individual might forget to eat or drink when engrossed in what they are doing. Being pulled away from this state of attention can be very unsettling, frustrating and even painful. It takes a lot of effort and energy to do so and explains why change and transitions can be challenging.

Sensory perception and processing

In difference to neurotypical individuals, autistic ones often have a more varied and intense profile of sensory perceptions. This relates to the seven senses as well as interoception. The later is the intuitive ability to help us to identify and interpret how we feeling any given moment and the presentation of our emotions in our body sensations.

This can result in reacting over responsive (sometimes called hypersensitivity) or under responsive. I recognise this terminology comes from a neurotypical and ableist perceptive of what is normal and I want to stress that it is a difference in processing not a deficit or disorder. Individuals might also be sensory seeking. The challenge is to identify, understand and knowing what you need; that makes it difficult to regulate yourself. This can be very frustrating and overwhelming, a barrier to communicate what is going on for you and asking for support. Sensory processing also fluctuates and be varied for different senses and throughout life.

Discovering you are autistic as an adult

Although, you are born autistic, you might not realise that you are until you are an adult. With growing awareness and understanding of autism in older adults, more and more individuals consider if they are autistic and seek a diagnosis later in life. This has partly to do with a broadening of the diagnostic criteria and a move away from viewing autism as a childhood or a male condition.

Autism in adults can look different to autism in children. Over the years, individuals often find ways and spaces to have a happy and fulfilled life according to their needs. Might it be they choose jobs and careers that suits their brain structure and align with their special interests or they established relationships with others who have similar communication and socialising patterns or have developed ways to adapt and adjust their environments to their sensory needs.

But it also often means that in order to manage the demands of daily life like fitting into a neurotypical world and managing what is perceived as normal functioning can lead to burnout and a range of mental health issues. They maybe found “acceptable” but not always healthy ways of stimming or had their autistic experiences misinterpreted and misdiagnosed as depression instead of autistic burnout. Masking and fitting in comes at a price and takes its toll. I often hear from clients remarks like “but I used to be able to function or socialise – why can’t I anymore?” Well, if you have run a marathon every day you whole life at some point your body and mind will not be able to do so any longer and something needs to change.

Navigate the diagnosis process

Whilst more adults are considering if they might be autistic and with that seeking a diagnosis, the whole process can be challenging and difficult to navigate.

Research‍

Many autism organisations and charities can provide guidance and tips with the diagnosis process and there are resources online.

Referral through a GP‍

It might help to do some online self-tests and print the results to take with you and ask someone to accompany you, so they can support you and speak for you with your permission. Be clear about what you want from an appointment with your GP - a referral to be assessed for autism.‍

Private Assessment

‍If you are considering paying yourself for an assessment, do you research, get recommendations from others and make sure it is by a service provider who is recognised by the NHS and your GP.‍

Assessment process ‍

There is a pre-assessment process which normally includes a questionnaire to establish if there is enough evidence to go ahead with the assessment. The assessment is an interview style appointment with a qualified professional.‍

Waiting times‍

Waiting times can differ widely throughout the country, but you probably have to wait for at least a few months up to several years. Be prepared for this if you want to or have to go through the NHS. Currently, you have a right to choose your health care provider.‍

Got a diagnosis and now?

Once you have your diagnosis, it is your decision what you want to do with it. Being diagnosed as autistic means you are classified as disabled by law, so you have a right to ask for accommodations by your employer and support with daily living , for example through Access to Work and/or PIP (Personal Independence Payment).

Support through and benefits of therapy

It doesn’t matter if you are self-identified autistic, diagnosed or exploring the possibility of being autistic, therapy can help you in different ways.

Clients have often a whole range from emotions from feeling validated in their experiences and difference, anger at the being misunderstood their whole life, trauma from being discriminated, sadness at not having know earlier, relief that they are not faulty, excited at finding their tribe and confusion at what that means for their identity, relationships and life.

Here therapy can be a space to express and share these emotions. Making sense of life experiences through a new lens of autism. Maybe they were not a fussy eater but a child with sensory food challenges. They were not unsocial or shy but just preferred their own company and engage in monotropistic activities.

It can feel powerful in feeling believed in your struggles. It can be a relief and validation to have a name and a language to understand what you experienced.

Often counselling will support with processing the trauma experienced like loss of identity due to masking to seem neurotypical, being misunderstood, ostracised, bullied and discriminated.

It also can give the justification and confidence to ask for support and adaptations, at work, in education and your relationships.

Therapy can also help to understand what autism looks like for you. What areas might be alright, a strength or a challenge? What changes you want to make? Relationships change as you might start to feel more comfortable and confident in yourself and begin to unmask and share what you need. Therapy is a space of exploration of your identity and finding your voice.

Practical tips

All strategies are not aimed at making the individual less autistic but to help managing challenging traits better.‍

Social interactions and communication

Social interactions and communication can be draining and overwhelming. Looking at what social energy is available, regular check-ins with yourself and planning your social battery might be useful. If you know that being in groups can be exhausting it might be necessary to limit the frequency and time spend in one. It is alright to say, you only have the energy to see your friends or work in the office once per week or to say you had enough and leave before everyone else.

Some individuals find it useful to have a planner and to manage expectations of others on what you are able to do up front. Try not to feel pressured to attend and to learn to being alright with cancelling at short notice if you need to. Some autistic individuals prefer one to one interaction, online socialising or text-based communication which is fine - whatever is best for you.

Changes and transitions

Changes and transitions can be challenging - remember monotropism earlier - especially sudden ones and those initiated by others or circumstances. Asking for support and time to adapt to changes, can be helpful. Asking for compassion and understanding by others and try to be kind to yourself. Your reaction to change is not personal and aimed at others, but a sign of dysregulation. Clear communication of what is happening and why can be useful.

If possible, ask for advanced warning and clarity in communication on what is happening and why. You might be able to ask for adaptations, for example if a venue needs to be changed, can you ask to have an input for the new one or share what you might need. It is alright to feel overwhelmed and unsettled with change and to allow yourself time and space to regulate and adjust. You might want to break down the change and transition into smaller steps, so it doesn’t seem too overwhelming and stressful. Coming back to that restaurant change, could you look the new one up online, familiarise yourself with the menu beforehand or do a trial visit.

Most importantly be guided by you and what you need, try to focus on what you can control and be kind to yourself.

Sensory processing

Sensory processing can be challenging. You might be easily overstimulated by bright lights or loud noises. There are some things you can do for yourself like wearing glasses with darkened lenses or wearing noise-cancelling headphones or in-ear loops. If you feel triggered by certain textures, there are specialist clothes without seams or you might want to cut out labels. It is alright to stick with safe food as long as you manage to eat a diet that is not detrimental to your health – even if you need to take food supplements. At work you might be able to ask for a quieter desk and working environment. In your relationships it might be asking others to first check with you if it is okay to be touched or hugged.

Overall, it comes back to you accepting your differences, being compassionate with yourself and to self-care as well as gaining and understanding and feeling confident to ask for what you need from others. You are alright in who and how you are.

If you found this blog useful, would like to give feedback or want counselling support – please reach out. We are here for you at the Tunbridge Wells Counselling Hub.