It is always sad to read about a suicide but it is even more tragic to read that it could have been prevented. In an article by the BBC it is reported that the death of an autistic teenager who committed suicide in 2010 could have been prevented by better treatment by the mental health services. The inquest in Bradford heard that the Surrey teenager had been bullied at college and that his mother struggled to get mental health intervention. The coroner found that though the teenager was in contact with many agencies there was failure in the care given to him which amounted to “neglect”. He also found that there was a gap in services for those between 16 to 18 years who fell between child and adult mental health services which may reflect a national problem.
For those of us who are caring for children and young people with mental health difficulties it is worrying to read of such failings. As a mum to an autistic son who has been experiencing mental health difficulties for a number of years I am already concerned about the standard of services within CAMHS (child and adolescent mental health services). As I have experienced, getting an appointment is not as quick as you would hope.
When my son first became unwell in 2009 with symptoms of severe anxiety we reported our concerns to his school who responded quickly and referred us to CAMHS. However, it took us three months to get an appointment with a psychiatrist which I think is too long to wait when dealing with mental health issues. Unbelievably we were told that we were lucky to get in as quickly as we did.
Lucky? I didn’t feel lucky at all; I felt desperate. His anxiety was aggravating his autism and causing him to become increasingly withdrawn as the weeks went by. Trying to get him out of the front door became almost impossible. On top of this, he also could not cope with visitors to our home and would cling to me whenever anyone visited. I found it difficult to leave his side without causing considerable distress to him.
Knowing there was nothing we could do to speed up the appointment I had to take matters into my own hands and do as much as I could to prevent my son from deteriorating further. I stopped encouraging my son back to school (his old mainstream school) as any mention of school triggered a panic attack. Instead I concentrated on getting him up, dressed and washed and eating at normal times and allowing him to rest inbetween which usually meant lying on the settee and watching a lot of television. This was all he could cope with at the time.
Eventually we received a home visit from the psychiatrist and a subsequent diagnosis of severe anxiety and agoraphobia. As a result, it was decided that my son would require a course of medication which I agreed to as it was clear to me that my son’s anxiety would be difficult to treat without some sort of medical treatment. As a result of going down this path, my son would need regular check-ups but I was told that these would have to be conducted in the clinic. I was told that home visits were only used in urgent cases and our son was not an urgent case. I explained how impossible it was to even get my son out of the front door and that his autistic behaviours were worsening. The psychiatrist agreed to make a further home visit but suggested that for subsequent appointments perhaps my husband would be better able to get my son out of the house!
The lack of flexibility by CAMHS and the assumption that my parenting was at fault placed huge pressure on me. Their attitude also made me wonder whether there was a sufficient understanding of my son’s disability and the impact on me and my family. Faced with such pressure we eventually did manage to get him to the clinic but not without an exhausting amount of coaxing and bribery and even then our son was a very frightened boy who could barely get through the door of the clinic.
Was it right to expose our son to such levels of stress so soon, just because CAMHS could not operate a flexible service? As it was, even though he got to the clinic on that occasion he was still unable to leave the house and go anywhere else for quite a period of time. We had to wait until the medication started to lift his anxiety before we could properly help him to recover from his agoraphobia.
Our negative experiences with CAMHS didn’t end there. In routine clinic appointments I often encountered staff who had little empathy with out situation and who often made no attempt to communicate with our son. Often I would be asked personal questions in front of my son which I felt were not appropriate to answer in front of him. Questions that related to mental illness within the wider family are not something that is easy to discuss in front of your own child. My son may have an autism spectrum disorder but people shouldn’t assume he can’t hear or that he won’t become frightened or confused about what he is hearing.
Equally frustratingly was the lack of other therapies. Whilst we managed to access a clinical psychologist for a short time we were not offered talking therapies as I was told that because my son is autistic he “will not be able to carry over what he learns in one context to another”. That may be the case but did anyone think that I could carry over what was being discussed in these sessions to the home environment?
As it was I had to learn how best to help my son and with that knowledge I was able to deal better with his agoraphobia when it started to reappear again last autumn. As we were already under a psychiatrist we were able to access her services quickly, modify the medication and start to encourage our son out and about before the agoraphobia got a grip. I had learnt that getting help quickly was crucial.