Catatonia, a mother's perspective
Tracey Mears is a mother with guts and determination. Thanks to her dogged perseverance in refusing to allow her son to slowly fade into the background unable to eat, speak or move, he is now facing a much brighter future.
Ryan’s 21st birthday is looming but rather than celebrating this milestone his family are coming to terms with the devastating news that he has catatonia, a debilitating condition that will affect him for the rest of his life. Ryan, whose parents run a Cornish holiday park, was diagnosed with classic autism aged two, which saw his needs dominating family life with his parents and siblings supporting him throughout his young days.
Tracey Mears, chairman of NAS West Cornwall Branch
His catatonia would have gone undetected if it were not for his mother’s concerns. She contacted health professionals across Cornwall trying to understand what was affecting her son, saying: “I believe Ryan’s catatonia started around 5-6 years ago. It is a very slow regression. People change but it’s often missed because it creeps up so slowly. Ryan saw psychologists and a neurologist who scanned his brain but found no abnormalities. They were putting it down to teenage hormones and even saying it was typical teenage behaviour. But he wasn’t a ‘typical’ teenager, he has autism. When he stopped eating it was horrendous but I was still getting no answers. Nobody picked up on it until his anxiety levels went through the roof.”
Up until this time Ryan had been enjoying respite care once a week at Fairfield, a home for people with autism, based at Bridge, near Portreath. Fairfield’s manager, Gemma Thomas, described her first meeting with a quiet, young man: “When I met Ryan two years ago he was a placid 18-year-old. He was so compliant and easy to be around. His behaviour changed over time, he started speaking in a whisper until he stopped talking altogether. His reactions gradually slowed along with his ability to process information. He started having involuntary movements and shouting. It was a struggle to get him out of bed in the mornings and it took a lot to engage him in any activity. He started to get ‘stuck’, especially going across thresholds and doorways when we would gently guide him to help him move forward. His behaviour could have been seen as him avoiding activities and contact with people - but we now know that it is because of his catatonia - he has the intention in his brain but he is unable to transfer this into physical movement.”
Desperate for answers Tracey turned to Consultant Clinical Psychologist, Dr Amitta Shah a researcher who has studied autism and catatonia for more than 30 years. Tracey, who is stepping down as chairman of the West Cornwall branch of the National Autistic Society this week so that she can devote more time to caring for Ryan, invited Dr Shah to meet with parents and professionals in Cornwall to raise awareness of the condition.
More than 100 people attended the event at The Penventon Hotel in Redruth where Dr Shah gave a presentation on catatonia, followed by a question and answer session. She also spent two days assessing Ryan, watching him at home and during his respite at Fairfield. She worked closely with Gemma and Tracey devising a support programme that would suit his complex needs. “Anyone with autism can be affected by catatonia at any time in their life,” said Tracey, “It is often misdiagnosed as schizophrenia or dementia which can be catastrophic because of the medication they are given or living in unsuitable environments which can be extremely stressful, exacerbating the catatonia until it takes complete hold.”
Tracey battled for five years trying to find an explanation for Ryan’s behaviour. Gemma added: “A year ago catatonia was mentioned, but no one in Cornwall had heard of the condition or knew how to formally diagnosis it.” Ryan was eventually diagnosed but due to the lack of knowledge and expertise of the condition locally no one was able to advise Tracey on how to effectively support her son. Ryan was put on various medications to relieve his anxiety and while they improved his condition initially he started to withdraw until he was staying in bed for long periods and having regular meltdowns.
Ryan’s behaviour baffled health professionals, his family and Green Light support workers based at Fairfield. “Before his assessment with Dr Shah we had no idea what was right for Ryan, we were muddling through,” said Gemma, “now thanks to Dr Shah’s experience and guidance I feel confident that we are doing what’s right for Ryan and putting in place a plan that will help him. From a professional perspective, Ryan slipped through the net because of a lack of knowledge in Cornwall. The danger is that other people with the condition will be overlooked and they will end up in the wrong care setting.”
The West Cornwall Community Learning Disability Team with the NHS Cornwall Foundation Trust and the Kernow Clinical Commissioning Group both confirmed that there is no formal process to diagnose catatonia at present because the condition is so rare in the county. While awareness may be growing in some areas, Dr Shah believes many professionals in the UK and internationally lack the expertise to properly diagnose the condition, adding: “It’s not something that can be diagnosed by a GP. Once the condition has been brought to their attention then they need to call in external experts to ensure the right care and treatment is being used. In many cases, parents are not listened to and there is a lack of interest from the [health] professionals. Catatonia is a progressive condition but with good management, it can be reversed but if you leave it the consequences can be very severe and in some cases, life-threatening.”
Dr Shah, who is based at Leading Edge Psychology in Purley, Surrey, is hoping to return to Cornwall to give more talks and highlight the importance of early diagnosis: "Catatonia is very complex and can be difficult to deal with, it puts a huge mental strain on the family and takes up enormous energy. The right advice and support are crucial."
For Tracey, Dr Shah’s support meant saving her son from a life with few opportunities, where he would be withdrawn and unable to communicate: “If Ryan had not been diagnosed his condition would have deteriorated and gradually over time it would have caused permanent harm. It’s important to understand the early signs of catatonia. When he started to slow down we wrongly thought that he needed motivating and we over-stimulated him which made his condition worse. The worst case scenario for me would be to see my son being put in a padded cell. I do think that he has been treated as a second-class citizen, without our intervention he would have ended up being hospitalised, nobody wants that for their young son.”
Acting on Dr Shah’s advice Tracey has opted for personal care within her own home, rather than sending Ryan to Fairfield, a move supported by Gemma who is ensuring that experienced staff, who understand Ryan are delivering the care, adding: “Providing the right support is not only crucial to Ryan but for his family as well. We are following Dr Shah’s recommendations that we follow a timetable giving Ryan’s family a routine so that his activities and other events are structured and predictable. He also needs a calm environment. I am so committed to getting this right for Ryan and his family giving them a break so that they can have quality time together. It’s important that we are flexible so that we can change the support to suit the family’s needs.”
Gemma Thomas (2nd left) and deputy manager Marie Sinclair, (3rd left) during a staff briefing with Fairfield support workers.
Tracey can look forward knowing that she is doing the best for her son, preventing the catatonia spiralling out of control: “Ryan does connect with people, he can’t cope with large crowds. He is very intuned with his family, we are his safety hub. Since we introduced the timetable we have seen his anxiety drop, he seems much calmer. We want him to be able to make his own choices and to have a life. More still needs to be done to highlight catatonia, people assume that the professionals know about it, but in my experience, they know very little about it in Cornwall. Ryan’s learning disability team and his special school knew nothing about the condition.”
Keen to draw upon Dr Shah’s knowledge to improve understanding among Green Light's support team. Gemma said of the programme: “Catatonia is a complex condition that is often misdiagnosed as dementia or schizophrenia and managed through medication which can make the condition worse. It can be fatal if not picked up early enough as the person will eventually stop eating and or be confined to their bed as they are physically unable to get up, even though they want too. Early intervention can make a real difference to the person's quality of life and I think having an awareness of the condition within Green Light would be really beneficial.”
*There is increasing research and clinical evidence that some individuals with autism spectrum disorders, including autism and Asperger syndrome, develop a complication characterised by catatonic and Parkinsonian features (Wing and Shah, 2000; Realmuto and August 1991).
For further information on catatonia please go to autism.org.uk
or contact your GP/ clinical psychiatrist.