Getting Jo’s medication right – a parent’s story

32 year old Jo has autism. Her mum, Gill, talks about the impact over-medication had on her daughter, her family and how she is now better off without the combination of antidepressants, benzodiazepines and antipsychotic drugs she was taking.

 

When Jo was 19 she had an acute reaction to stress as she was living away from her family, her home and friends. She struggled with the transition into adulthood, the expectations and changes in rules in becoming an adult.

She was assessed by the local mental health team and without a definitive diagnosis, was soon given Olanzapine, then risperidone, citalopram, mirtazapine and lorazepam. We became increasingly concerned due to her rapid weight increase, emotional bluntness, increase in liver function blood tests, blood sugars, movement disorder, and catatonia.

We tried to raise concerns with Jo’s general psychiatrist. We were told it wasn’t the medication which was causing the weight gain but her diet. The side effects seemed to be outweighing any benefits. We had to keep challenging the mental health team. The relationship between the family and the professionals broke down. Jo was getting worse, I was having to take time off from my job as an emergency department nurse to care for Jo, as her needs increased dramatically.

We kept asking for help in the community, instead she was sent 200 miles away to a private assessment and treatment unit (ATU). We managed to free her with the help of a human rights barrister. When we got Jo home she was in poor physical and emotional health.  She found the hospital environment stressful and unsafe.

After a traumatic period in 2010, we managed to find a development psychiatrist and a consultant psychologist, who specialise in autism. Both shared our concerns around the use of medication. Over time, we slowly reduced Jo’s medication, started with antidepressants, then lorazepam, and within months Jo’s blood sugars, her liver function returned to normal, her weight rapidly reduced to pre-medication range.

We were getting our daughter back. The GP devised a health care plan with all of us. The GP was fantastic and equally concerned around the medicalisation of people’s lives.

Jo has been discharged from general psychiatry for five years now and consistently lives a happy, safe life, enjoying her time in the community. We support Jo using positive behaviour support, inclusion and the love of her family.

While we recognise that some medications can sometimes be helpful, we do feel that it is important that adults with a diagnosis of autism, in fact anyone who is struggling with their wellbeing, should be regularly monitored. If side effects outweigh benefits, this should be acted on rather than leaving people on these drugs for years and years, when perhaps they are not needed.

We have devised a personal health record, which allows families to monitor medication with their loved one and make sure the person’s physical health is not affected.