Eilish’s story

This is a list of ideas based on what I would like my GP to know about Autism Spectrum Condition and Mental Health Difficulties:

• My MH problems should not be written off as a part of my ASC diagnosis/ difference
• I might have cried for 10 hours non-stop. I might have had to detach from this experience and the associated feelings. I might not be crying now, but what I’m reporting is still true
• I would find it helpful to be asked: “Have you found anything helpful in this situation in the past (if you’ve experienced this before) / do you have some/ any coping strategies that you could use/ that might help?” (This is because when I’m in a difficult place with my MH, I usually lose touch with my coping strategies (of which I have many) – so this question is neither too obvious nor patronising.)
• Validation is great – I NEED this. (If you don’t understand me, ask me to explain, so that you can understand and are therefore able to validate my experience.)
• Invalidation is frustrating and it only makes things worse
• If my behaviour seems illogical or irrational to you, ask me to explain it- I always have some logical or rational explanation for what I do/ how I behave, which might not always be obvious to a neuro-typical person
• If you give me an open-ended question where you expect me to choose from a range of known or unknown options, e.g. you say: “What do you want/ expect me to do?” – I might be unable to answer this question. I might feel guilty that I’ve come to see my GP at all. This can make me feel far worse. My reply: “I don’t know”- will not indicate this.
• This might have been very difficult for me to do- to visit my GP. If I’ve been isolating myself, my social anxiety will have increased. This is a break from my routine and it can be difficult
• I might go home to isolation
• Living in relative poverty and with financial stress (socio-economic stress) can make things a lot worse
• I always tell the truth
• I tend to assume that other people always tell the truth- which can be a problem- I am often bullied
• I might be in meltdown (and have been crying for 10 hours), but not at risk of harming myself or attempting to end my own life
• I find that it always helps me, to write things down
• I might be lacking sleep
• I might need to be kinder/ more forgiving to myself
• I am obedient/ easily manipulated/ easily controlled- is my problem because someone has told me to do something? Have they told me to do something that I think is wrong? If so, what do I think might be the right thing to do?
• I might use humour to compensate for fear or grief or loss or embarrassment or pain: I might therefore appear not to be taking things seriously- but I am
• I don’t mind if you ask me to repeat things, which we have discussed or agreed, back in my own words. I know this is good clinical practice
• Please remind me that, “things will get better”. (When I am in a difficult place, it can feel as if it will never get better).
• In anxiety, I can feel ‘lost’ in a familiar building.
• In my most extreme distress, I am lying prostrate on the floor
• Are the things that are overwhelming me (with stress and worry) beyond my control?
• I might feel insignificant, but are there people to whom I matter?
• It helps to know: that it is okay that I came here today; and that it is okay for me to come back again

I think it might be helpful for a person’s friends/ family/ carers to know what to say after an act of self-harm or an attempt by a person to end their own life. In my experience, I have done risky behaviour to punish myself because I feel that I’ve harmed my family. My family have judged me, not spoken to me, and undoubtedly assumed that I have done this to hurt them, or to manipulate. A kind colleague said better: they said, “I’m really sorry that happened”. They understood my pain.