Autism and mental health – one family’s journey

“My daughter, Mair, is autistic with severe and enduring mental health difficulties. She was diagnosed with autism 6 years ago when she was 15. She was referred by her school and diagnosed through CAMHS (Child and Adolescent Mental Health Services) because she had developed serious mental health problems.

My family have been on a roller-coaster ride of suicide attempts, A&E Admissions, Psychiatric inpatient admissions, discharge and recovery, relapse and re-admission, securing support, losing support, progress followed by decline followed by progress, understanding and lack of understanding from others, hope and fear and hope again. The most difficult thing has been dealing with shattered hope; I would be better off if I did not hope, but that would be to give up and I will never do that. I live in dread of withheld numbers calling my phone (the NHS and Police call like this) in trepidation of what I am about to be told.

I could write a dissertation on the failings of mental health services. During Mair’s last inpatient admission, she absconded from the ward on several occasions despite being on a cycle of 15-minute checks, once it took 45 minutes to notice she was gone. Twice, while she had absconded she took an overdose of paracetamol and ended up in A&E. This is while we, her family, thought she was safe. The main reason behind her admission being to keep her safe. On discharge from hospital, the psychiatrist acknowledged that Mair would probably go into crisis again. This is terrifying for us as each crisis results in more serious self-harm and more suicide ideation.

Our story has been characterised by delay and poor communication between services and even within services. In our experience, the professionals caring for Mair have not spoken to each other, staff turnover and lack of inter agency working has meant we have had to repeat our story many times, wasting valuable appointment time as well as being extremely frustrating and confusing. I have needed to be an advocate for my daughter, and as she has become an adult, she has had to become her own advocate as services are hard to access and we have had to push. The crux of the problem is that, despite political rhetoric, mental health services are not on an equal footing with physical health services. My daughter has life threatening mental illness; if she had life threatening physical illness, our experiences would be different. There would be fewer delays in getting treatment for one thing and more support for families.

Autism is different in girls. Girls are excellent at masking symptoms of autism, my daughter did this thereby her diagnosis was delayed. She knew she was different but did not know why; she developed elaborate masking behaviours that worked well at first, so well no one, including her family, noticed. This eventually became too much and she became mentally unwell. Those learned behaviours are now difficult to undo, not knowing what was wrong meant there was no understanding for Mair of why she was different, she came to her own conclusions and felt she simply did not belong. Early autism diagnosis is vital, even without support services to refer families to, as it aids understanding, awareness and acceptance of difference. I have witnessed medical professionals claiming that autism diagnosis is not a priority as there is nowhere to refer families post diagnosis. While this lack of services for autism is of great concern, it is misguided to not diagnose as it fails to recognise the importance of understanding, awareness and acceptance. For my family I believe earlier diagnosis of autism could have minimised, maybe even prevented, the development of severe and enduring mental health problems. Like most mothers when things first went awry I forensically examined our family life looking for what I did wrong.

I switched between concentrating on past mistakes to worrying about future scenarios. This was unhelpful. I have come to accept that I made mistakes, but all parents get somethings wrong. I do not have a time machine to go back and change things so now I try to balance it with what I got right. In particular my children have always been loved, well cared for and the centre of our family. They always have and always will come first. Likewise, I try not to worry about the future, in particular to dwell on scenarios that might never come to be, this is exhausting and not constructive. Mindfulness principles have been helpful and I continue to try and practice them whenever things feel like they are spiralling out of control.

The hardest lesson for me as a mother has been to understand that I cannot ‘fix’ this. I need to work with service providers who have the expertise and experience to help, I’ve had to relinquish control. My role, I’ve come to accept, is to provide love, support and security every day and to work with the professionals. This is not easy, but I continue to preserver with varied success. It’s important, I believe, that the professionals listen to me and my husband and our concerns. We know Mair better than them. We have 24/7 care responsibility, they should be working with us. Nearly all NICE guidance talks about the importance of working with families but the reality in our experience has been quite different.

We have needed support on our journey and got it from local support groups and charities. I feel less isolated by talking with families who have similar experiences and a local mental health charity, Hafal, has been able to advise and support us during our bleakest hours. This external support has been vital to our well-being. Not everything has been a negative experience. Individuals have more often than not been caring and dedicated but over stretched by working in underfunded services.

Mair’s school, and more recently her college, have been supportive. I would single out Mair’s interaction with the police which has been outstanding, they have been truly lifesaving and acted with genuine kindness and understanding. As a family, we have become much closer. I know the people I can rely on for support and they are always there. My son is an extraordinarily thoughtful and considerate young man and Mair is an accomplished young woman, despite her struggles. She has achieved so much more in her 21 years than many people ever will. She addresses large conferences, participates in consultations, appears in TV and Radio interviews all to promote mental health awareness and tackle stigma. She has won awards for her work, most recently the St David Award for Citizenship.

We are a strong family unit that has stuck together and we will be OK, all of us.

Tracy

6 responses on “Autism and mental health – one family’s journey

  1. Jayne

    This story fills me with such worry for my daughter. She is 8 years old and to me is High Functioning Autistic.
    Her 6 year old brother has a diagnosis of Autism.
    She is masking it all in school and comes home and totally loses the plot.
    We are looking at going private thanks to the help of my parents. The community paediatrician she has is ready to discharge her as her development is okish and school sees nothing.
    I am so glad Mair is finally getting the support she needs and I hope one day I can say my daughter is to.
    Thank you so much for sharing your story. Xxxx

    1. Sarah Jones

      Hi Jayne, thanks for your comment. We’re so glad you enjoyed this article! Our advise would be to keep communication open with the school, join a local support group (local NAS group for instance) and learn to look after yourself as parents.

  2. Margaret Thewsey

    Thank you so much for your article. My daughter has followed a very, very similar path to Mair. Rebecca’s mental health decline though leaves her as a selective mute. She has now been at a specialist Autism school for 16 months, but cannot navigate the school without support, cannot ask for food,a drink, or to go to the toilet. She is now turning 18, so this leaves her very vulnerable, and she cannot leave the home without a parent. Rebecca did not get a diagnosis until she was 15. Again she too masked her difficulties until it all became ‘ too much’. We too could write a book on the support that has sometimes happened, but more often hasn’t, or not in a very productive way. I do wish you all the very best, and hope that things do improve in the future. Thank you for writing though, as I don’t feel so alone with the issues we deal with each day.

  3. Heather

    Hi its so sad the resorces are not able to cope with this. I have a grandson 12yrs not diagnosed. They say because he will not comply or talk to them they cannot do anything to help him. He will not go to school, is always wanting to die he has massive mood changes he agressive the list goes on…
    The also has sensory disorder we as a family really need help but no-one to help us!!! Does he have to hurt himself or others to get that help??? What can we do?

    1. Sarah Jones

      Hi Heather, are you in touch with a local support group such as a NAS group? That would be a good place to start to find out what help is available in your area but also to offer you support.

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