Torn Between Two Services

I’m calling myself neuro-typical here, because I don’t meet any diagnosis criteria. I certainly don’t experience any of the long-term issues around social anxiety and isolation that my daughter does. But I have been called ‘quirky’ all my life, which is why I may have been slow to pick upon the real problems my daughter experienced during adolescence. I assumed she was just a bit idiosyncratic, plough-your-own-furrow kind of a gal, like her mum. Rather than an introverted, needing a system, not comfortable in social situations person, like her Dad.

And now she has slipped away from childhood into the murky world of young adulthood and I find myself at a loss as to how to best support her.

I‘m not going to say too much about her. She deserves privacy. I never was one of those Mums who disclosed everything on social media. I was aware very early on that she deserved her privacy, her own way of telling her story. But there are some things I want the world to know about my fabulous daughter.

She is incredible. She is clever, that was obvious from an early age. She has an eye for detail. She has a dry sense of humour. She has lots to offer the world through her sense of keeping track of the complex and the minutiae of life. She has autism and OCD.

I know that OCD and an autism diagnosis are frequently over-lapping. OCD is a common coping mechanism for making an overwhelming sensory world and the myriad of incomprehensible social interactions make sense. And yet… treatment for OCD… well, in our experience has been that the mental health world would like to see them as two separate entities that should never meet. My daughter has been described as ‘complex’.

So, what to do?

I’m not really looking for advice here. I will not be responding to comments that are telling me what I should be doing, because unless you really know me or my daughter please keep that to yourself. I get enough unsolicited (unwelcome), well-meaning (intrusive) strangers (busy-bodies) giving advice all the time. I just want to point to the dilemma, so that someone somewhere will listen and stop configuring services so that whole lives can be dismissed.

Disability politics is always difficult. I remember being in a seminar with the disability activist and advocate, George Julian, talking about how she encountered the landscape as ‘tribal’. I laughed along with recognition even though at that time I didn’t think it would apply to my personal life. When it comes to neuro-divergence the battleground of the scene is highlighted, with categories, diagnosis, and self-assessment becoming weapons.

I don’t want to engage with all that too much. My daughter is ‘different’ to many people. Her difference causes her distress and misunderstanding. Some of her difference could be accommodated by quieter places, less social demands and a space to hyper-focus. Some, but not all. Because right now her OCD is so severe that she feels unsafe leaving the house. Her OCD needs treatment. Without treatment she will not be able to access services that will tackle the social isolation. Basically, mental health services say she needs social care and support and social care service say she needs mental health support before she can work with their support workers. But she needs both. (Complaint letters have been drafted and stored away).

But this is the crux for us. So many therapies for OCD involve exposure therapy. But my daughter needs longer-term trust building before she can cope with the exposure to things that currently feel unsafe for her. CBT and NHS targets about number of sessions do not allow for that kind of work.

Some advocate neuro-affirmative care, that says she has a distinct neurology and that exposure treatment would be tortuous and counter-productive. Others say that without the challenge of exposure, her OCD will never get better and that she is blocking her own progress. This produces trauma that gets called resistance. Either way, her autism is seen as a means to ensure her OCD remains untreated.

Trauma responses in my daughter are mainly of the freeze variety. With a brain that has struggled to understand the world around her, whilst constantly being told she is bright, so what’s her problem, her anxiety responses have been on overload for a long time. Flight or fight are no longer possible. She is left with freeze or flop (which gets renamed Pathological Demand Avoidance as though she is just a stroppy toddler who won’t do as she’s told.)

What I want more than anything for her, is a professional who says, “I believe you. Your experience makes sense. I will work with you for as long as it takes.”

And what I need as her parent is someone to say to me, “You’ve done your best. We can see, you love her. This is not your fault.” (At which point I will burst into tears, because I’ve carried guilt and shame for a long time). “Here are things that may help. Try them. And if they don’t work, we will not berate you for stopping. There is time to do this work.”

My daughter will always need support. But she also has so much to offer the world, through her kindness, her intellect, her pursuit of detail.

Please can someone just provide for the whole of her.