The world of living with mental health and learning disability/autism - a short story about Emily
Updated: Apr 1
In a society where mental health is being spoken about more and more, there is a particular subsection of the population that particularly struggle to do this or to be understood even to a basic level sometimes. This is the world we, MMBM, are now working in - the world of individuals with diagnoses of learning disability/autism and mental health disorders/traits. The complexity of these diagnoses intermingling results in behaviour displays that earn the individuals a hefty reputation. Just imagine that some may not be able to understand their feelings; some may struggle to express their needs or frustrations; some may not have methods of self-regulation to minimise the internal suffering. Just imagine the anguish you would feel if someone reacted to your distress by restraining you and you can't express to them the suffering you feel inside or how you want them to treat you, so the restraint and suffering continues. These are vulnerable people that are not brought up in topic too much in relation to mental health discussions. We think it's time this changed! After all, it's estimated up to 52% of people with learning disabilities suffer from mental illnesses. Why is this not talked about enough? Why is not enough being done to address this? We hope that through the work we do in providing bespoke support to these individuals, it is a start in addressing this awful statistic - to remove them from their current circumstances and give them a better quality of life.
To really hit home what impacts society has on vulnerable individuals such as this, but also what a difference it makes to give them a better quality of life, we interviewed a gentleman whose daughter has been through exactly this. We have changed both their names to keep them anonymous.
Fred's daughter, Emily, has had a difficult and restrictive life. When young, she was not yet diagnosed with anything, but Fred says her vulnerability and difference was obvious. Her vulnerability led her to fall in with the wrong crowds to abuse drugs and alcohol. As her behavioural displays became more and more challenging to her family and the public, she was diagnosed with Schizophrenia, although Fred did not trust this diagnosis and instead thought Emily to be autistic. Already, there seemed to be misinterpretations of how Emily perceived and reacted to the world. Emily's quality of life became worse and consequently, her aggressive behaviour led her to be sectioned. Here, Emily was given shock treatment and then plied with medication specific to this Schizophrenia. Emily remained in a secure institution under a Mental Health Act section after having attempted to live with her family which broke down. Over time, it was apparent that this medication did nothing for her behaviours; and so clinicians increased the dosages of her medication. This eventually resulted in damage to Emily's intestines and also kidney failure. In all this time, Fred also battled hard for the diagnosis of autism for Emily, but was always brushed off. Eventually, Emily was diagnosed with autism, although this was many years later. Too late. By this point, Emily had been locked up in institutions, not even able to get out to have a smoke, for 30 years. 30 years of being locked up and not allowed to leave. Once Emily was diagnosed with autism, a panel determined that Emily had been receiving inefficient support and had suffered irreversible damage from the drugs she had taken, never mind the trauma she faced in those 30 restrictive years. Emily was consequently given a council house for herself and began receiving support from a service that built up a close relationship with Emily, so the staff were very familiar with Emily, and Emily was very familiar with her staff. Her environment was now much less restrictive in nature, and her quality of life very obviously improved. It was clear she was more settled and had completely stopped showing any aggressive behaviour. She has lived there ever since in the community, and happily.
This short story shows how such a simple act of removing someone from a situation and giving them their own home can be a great start to improving the quality of life for these vulnerable individuals. They may not be able to effectively speak up around their mental health and their struggles, but we as a society need to make more of an effort to understand them and adapt their environment to suit them, otherwise we are just contributing to their suffering. This story shows just how misunderstood Emily was for a huge portion of her life, bearing in mind that Fred did not go into most of the details of what Emily experienced and suffered from in her 30 years locked up. This suffering should never have happened to Emily, nor should it ever happen to any other person, and while we, as MMBM, cannot change the past lives of these people, nor any trauma that contributed towards their mental health, we can at least give them hope and happiness in their present and future lives through our work. If you want to see more details on what we do, check out the rest of our website. We will be speaking up for and acting for the rights of these individuals that struggle to express themselves, to give them a better life, and to increase awareness in our communities of the struggles of living with mental ill health and learning disabilities/autism and what we can all do about it.