thetimes.co.uk 21-2-22 Professor Tanya Byron

Can I still be diagnosed with autism in my seventies?

Q I am in my seventies and happily married, outwardly content, with a beloved son who has recently been diagnosed with ADHD and has self-diagnosed as being on the autistic spectrum and is pursuing an assessment. While appearing to function “normally”, all my life I have felt different, the “odd one out”, and I have reached a point in my life where I would give anything to find answers to the awful struggles I have had throughout my life.

Even as a young child I would bottle up emotions although I had no reason to be secretive. I knew I had a high IQ, but was always shy and have a strong perfectionist streak. I still had friends and achieved a good degree, but the secretiveness, “otherness” and the agonising struggles with social situations are with me to this day. In career terms I chopped and changed and generally underachieved, being without any real sense of ambition and having lifelong frequent bouts of unexplained unwellness and exhaustion.

In recent years I have been wrestling inwardly with trying to understand my complicated personality. I have only seen a psychologist once in my life, during a period of depression in my twenties, and I don’t recall that doing me any good. And later on maybe it always seemed a bit self-indulgent, or even embarrassing, to think of seeking any kind of psychoanalysis. Better to keep my head down and soldier on — after all I had a husband and child to look after and a thousand other duties claiming my attention.

I have more than once worked through autism questionnaires. I have answered with complete rigour and honesty and the results would always seem to place me well on the autistic spectrum. Am I being ridiculous in wanting to seek answers at this stage in my life? Do people get diagnosed with autism spectrum condition in their seventies?

The thought of trying to speak to someone at my GP surgery about it is unimaginable, especially at a time of such pressure for the NHS. It isn’t making me ill, after all.

Katrina

A Your letter moved me because it is clear that, despite a well-lived life with a happy marriage and a cherished son, you have struggled inwardly with many issues since childhood that have made life, at times, feel more challenging and have left you feeling confused in terms of a real understanding of who you are. You describe anxiety related to perfectionism, social anxiety and a struggle to articulate emotion as well as a period of depression.

Your question regarding whether you have an autistic spectrum condition (ASC) is relevant because it seems that an answer to this question would help you to settle in terms of an understanding of yourself. You are not “being ridiculous” at all. However, it seems as if you have done extensive research and self-administered questionnaires that suggest a strong possibility. Additionally, your son’s diagnosis of attention deficit hyperactivity disorder (ADHD) and his pursuit of an autistic spectrum assessment would add weight to the possibility of your being neurodiverse given the strong genetic component underpinning neurodevelopmental disorders/differences.

ASC is a complex, lifelong neurodevelopmental disability/difference that is thought to be predominantly genetic or heritable and typically appears during early childhood, affecting a person’s social skills, communication, relationships and self-regulation. One in 100 people are on the autism spectrum and there are about 700,000 autistic adults and children in the UK. The primary characteristics are 1) social-skill difficulties, 2) difficulty with expressive and receptive communication, and 3) the presence of restrictive and repetitive behaviours. So people with autism may struggle with communication and social interaction. They may also find it difficult to understand how others think and feel and interpret social cues, and find social events stressful and overwhelming especially in crowds and if there is a lot of other sensory stimulation (eg bright lights, noise). They also get caught up in repetitive behaviours, have a rigid need for routine, struggle with change and show hyper-focus around specific interests. Children and adults on the autistic spectrum can also experience high rates of comorbidity, the most common being mood and anxiety difficulties and ADHD.

Women are less likely to be diagnosed as being on the autistic spectrum because they can often mask the key indicators via skills of social camouflage. High-functioning autism (which I suspect you may have) is especially easy to overlook because difficulties are not always obvious and masked by high function and high IQ. Additionally, older adults have rarely been diagnosed because they reached adulthood before the time of greater public and clinical awareness and understanding of ASC, and before the current diagnostic criteria for ASC were formulated. Autism first appeared in the Diagnostic and Statistical Manual of Mental Disorders (DSM-III) in 1980 and it wasn’t until 1992 that autism and Asperger’s syndrome appeared in the World Health Organisation’s International Classification of Diseases. Asperger syndrome first appeared in DSM-IV in 1998. Also, validated screening and diagnostic ASC instruments for the assessment of older adults are not as well developed and available. Finally, it can often be more challenging to reach a definitive diagnosis in an older adult due to challenges in obtaining a full developmental picture (eg parent reports, school reports); also, cognitive decline or other age-related cognitive difficulties make assessment more complicated.

The risk of all this is not only that people, like you, struggle for years with the challenges of being neuroatypical in a world designed for neurotypicals without understanding why and without receiving appropriate understanding and support. It also can be misdiagnosed or only treated for comorbid problems (eg depression and anxiety) without a clear understanding of the core underlying issue. This means that there are older adults who I have worked with who have received treatments that have been unhelpful and even damaging.

I support you in your wish to be assessed and understand whether you have an ASC. I appreciate your thoughtfulness in terms of not wanting to burden an already overburdened NHS, but I do believe you have a right to pursue this assessment given its importance to your self-understanding. Indeed having an understanding could hold immense therapeutic value to you as well.

To this last point, I urge you to challenge the sense of embarrassment surrounding talking to professionals and receiving diagnostic and therapeutic input. It is not “self-indulgent” and indeed I wonder whether if you had continued to meet the psychologist you saw once when you were struggling with depression, the issue of autism and the challenges you have faced in your life related to ASC might have been eventually uncovered.

This will be a challenge to you because, like many on the autistic spectrum, you struggle with social communication and emotional articulation and so the thought of talking to someone about your most personal issues feels extremely awkward. However, practitioners who work with those who have ASC understand this challenge and will skilfully and compassionately work with you so that you feel comfortable and able to make best use of the process. I believe that the exhaustion and feelings of “unwellness” throughout your life plus the “agonising struggling with social situations” need to be understood and processed. It can be exhausting and incredibly stressful for people on the autistic spectrum to navigate social worlds that feel overwhelming and confusing.

Issues with mental health and function do have equivalence to being “ill” in terms of assessment and support. Therefore, I advise that you speak to your GP, who can refer you to an older adult psychiatrist (or suggest a private referral). You can also search for private practitioners via the British Psychological Society directory. See also autism.org.uk.

My hope is that you will find answers and also have professional support to process the many challenges of your life probably underlined by ASC. I also hope that this could mark a new chapter in your life, not only of a more settled understanding and acceptance of yourself (and your “complicated personality”) but also a chance to find communities of others like you where you can feel at home.