Book Review: Looking After, Autism Family and End-of-Life Care

I remember picking this up in a bookshop earlier this year, and I was intrigued by the title, which focused on autism and end-of-life care. Two things which are not like the other. I was hooked on how our understanding of autism has vastly developed and changed over the last 100 years. When the author Caroline Elton’s older brother Lionel was born in the late 1940s, his autism diagnosis would’ve meant a life abandoned in an institution. However, Caroline and Lionel’s mother refused such a fate for her child and endeavoured to fight for her child to have as normal a life as possible.

From what I gleaned, it was a lot of work. The odds were not in Lionel’s favour back then. They were told that he would not talk, would have a limited mental capacity and would need expert care for the rest of his life. But putting Lionel into an institution, like so many others with disabilities, would’ve meant an early death, probably from infection due to poor care. What we actually get is Lionel’s mother fighting to get him into everyday schools, to get qualifications that would enable him to get work and then finding a company that would hire him. Suffice to say it was a real uphill struggle. Elton does note that it is hard to say whether all of this was acknowledged or appreciated by those around her. Elton definitely notes that when their mother died, and she and her sister Liz took over the care of Lionel, they took their mother’s care of Lionel for granted. She did everything. So taking over was a challenge; they became the emergency contacts for everyone, whether it be for Lionel’s part-time job, his housing association, or the hospital. You name it, Caroline and Liz were the first to be called. As such, the book focused a lot on the advocacy that their mother did for Lionel. Whether it was searching for charities, speaking to early specialists on the subject of autism or connecting with other parents and families who also had an autistic child.

While there were a lot of pitfalls to having an autistic child in the mid-20th century, there were a lot of wins. Lionel was an excellent mathematician and musician, and his mother’s advocacy meant he could study at music college and earn a qualification as a junior bookkeeper. He had many merits and showed that, whilst disabled, it didn’t mean that he wasn’t capable of hard work, study and trying to be independent. In short, it was one of the most uplifting parts of the book, and I do think the mother’s advocacy and contribution to autism research helped change attitudes. Naturally, there were always people who would misunderstand or who wouldn’t put up with the meltdowns and the unusual ticks and behaviours that are typical of autistic people, but that shouldn’t take away from Lionel’s achievements. Obviously, a lot more is known and understood about autism to the point where the definition of the diagnosis and traits have vastly expanded to include a whole spectrum.

All in all, a really uplifting read and was really, really enjoyable to read, as the narrative was very engaging and not a hard read like some non-fiction medical books can be.