Frank Smith (not his real name), a 55-year-old man with a mild learning disability, told me in his first psychotherapy session how he got up one day and decided he did not want to go to the day centre. “So I stayed in bed.”
At the time, he was in his middle 40s, and it seems that he stayed in his bed for about a year.
When discussing this with him, he was clear he was not physically ill, nor did he experience it as a depressive episode: “I was not down in the dumps.”
Smith told me that his days were spent listening to the radio in his bedroom. “I would put on my dressing gown and go downstairs for meals,” he said.
At the time, he was living alone with his mother, and it appeared that she was compliant with his decision to remain in bed and carried on with her life.
I was understandably curious about this episode. What was his underlying motivation? What did his mother and family think about this and how concerned were the support services about him?
I started to think: was this an example of a midlife crisis? And is it a useful concept?
Referral for psychotherapy to
the NHS service I work in is
often linked to transition,
either when entering
adulthood or in middle age
What is curious to me is that there is plenty of research on the other transitional periods in the lives of people with learning disability but not on the middle-age transition. This is despite widespread acknowledgement that this group can have fewer skills and resources to cope with significant life events.
British psychoanalyst Elliot Jacques introduced the concept of the midlife crisis (1965) as a unique transition phase with many internal and external struggles. It can be a time of life to reflect on missed opportunities, paths taken and paths not.
For Jacques, a crucial aspect is the capacity to be able to grieve for many of one’s youthful ideas and ambitions that are central in determining personal creativity in later life.
The critical factor above all else for Jacques was facing up to the fact that we will die. Midlife is hard to define precisely, in part because of social changes over the period. Today, most authors would put midlife in the 40-55 age range. Smith was in the age range.
An angry retreat
Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.
Smith was the youngest of four siblings, with two sisters and one brother, in a working-class family. He was diagnosed with a learning disability as a young child, went to a special school and then a local day centre. He never worked.
There was a lot of concern about Smith before his referral for psychotherapy. A number of professionals had noted that he went to bed for a sustained period and was struggling with living arrangements. This was one reason why Smith was referred for psychotherapy for “loss and bereavement” (O’Driscoll, 2017).
During our first few psychotherapy sessions, I started to build a picture of his year in bed. I felt that Smith’s behaviour was an angry retreat and his bedroom had become a safe place away from an unwelcoming, disappointing or dangerous world for him.
How had he got to an age (he was in his 40s) where he had hoped and thought he would have had more success than he had? He did not have a job or a wife or a house or a car, or any of the things his siblings had.
It was difficult for him to think about this as he was clearly focused on making up for it now, even though the reality of his situation was far from his fantasy.
We have moved a long way from asking if people with learning disabilities can benefit from psychotherapy. The literature has supported this for some time (Sinason, 1992).
This is important as people with learning disability are susceptible to the effects of loss, and four times more likely to have mental health issues than the general population. We also know about their vulnerability to abuse and bullying. The list could go on.
The scenario for a referral for psychotherapy to the NHS service I work in is often linked to the challenges of transition, either when entering adulthood or in middle age.
The psychotherapy service gets a number of referrals in these areas. Looking at those made to the psychotherapy service I work in from September 2017 to October 2018, I found the majority of patients were in this midlife, 40-59 age range (roughly around 55% of referrals).
A number of major life events can affect us in middle life.
Researchers do not see people
with intellectual disability and
their struggle (or otherwise)
with midlife as interesting, as
worthwhile research material
I think the key one for many people with learning disabilities is the death of parents. Smith could not remember the age of his father when he died, but it was clear that he was middle aged and died while his son was a teenager.
I was interested that he went to his father’s funeral, which was significant as many people with a learning disability are excluded and struggle with their reaction to grief as a result
Loss and ritual
Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.
We know that many people with disabilities have a lifelong history of loss, separation and abandonment. We also know that they are more likely to miss out on attending a funeral
or other rituals of significant figures from their life. A growing body of research on loss and learning disability emphasises people’s vulnerability at these times.
Smith went to the funerals of both his father and mother. It is clear that being part of collective family grieving can help with a person’s grief, and that the way in which early experiences in childhood are handled is central to later adult grief reactions.
In the sessions, I tried to discuss the experiences of the funerals and the grieving period afterwards with Smith but without much success.
I did sense urgency in the way he spoke about his life and I felt he was somewhat lost. Despite the loss of his mother, it was a struggle to help him to think about her. I think this was due to some conflicted feelings that losing her brought up for him.
I would argue that individuals with learning disabilities are particularly vulnerable around the midlife transition as they lack good experiences around loss.
Treatment ended after 10 months, and Smith missed several sessions. Despite this, I believe my interest in this concept of the issues around midlife helped me to help him.
He was able to start to plan for his future and think about his new life and became less focused on gaining lost ground on what he had missed out on.
He was more realistic, seemed less manic and was calmer. While he had a sexual relationship, which did not last, Smith was more accepting of his situation: “This may not happen, if so, so be it.” It was only through the experience of seeing Smith that I started to consider this concept of midlife crisis with regards to people with learning disabilities.
I appear to be alone in this. In none of the texts is it mentioned as a challenging transition. Researchers do not see people with learning disability and their struggle (or otherwise) with midlife as interesting Đ as worthwhile research material.
There is a gap in research around the emotional life of people with learning disabilities at this stage of their lives. I wonder if it is too painful to think about.
Absent life milestones
Finding homes for supported living can be difficult. Lisa Brown is bringing property investors and care providers together to design and create accommodation to meet various needs.
Maybe it is something to do with the idea that many of the traditional markers of midlife, in terms of work, career or status, or empty nest syndrome, may not always apply to people with learning disabilities.
Or is it to do with the difficulties for researchers in thinking about trauma?
It is at this point when people with learning disabilities may have to face up to personal disappointments they might find difficult to articulate.
These can include not having a meaningful paid job, an intimate sexual relationship or children.
There can also be an ongoing sense that they are being still treated like a child, infantilised despite being 45 years old and feeling that maybe nothing will change and that, ultimately, time is running out.
There is also the death of their parents to negotiate; this can have extra significance as it may involve a transition from the family home into supported living.
All this happens against the backdrop of society’s ambivalence to them.
For these reasons, I think we need to explore further how midlife can be experienced as traumatic for people with a learning disability.
References
Jaques E (1965) Death and the mid-life crisis. International Journal of Psycho-Analysis; 46: 502-514
O’Driscoll D (2017) Grief. The price of love. Community Living; 30(3): 8
Sinason V (1992) s and the Human Condition: New Approaches from the Tavistock. London: Free Association Books
