*WARNING* some may find this upsetting. Your feedback / opinions / recommendations welcome

I’ve just joined and have just finished watching the 2 episodes of autistic minds which I found brilliant. I’m recommending to everyone I meet that they should watch it!

I have recently set up a charitable organisation in memory of and as a legacy for my 19th at old son who we lost in November 2021 to suicide.

He was autistic, but it was missed. This contributed to a severe mental health decline where he tried his best but I guess he felt the only answer to his pain was to end his life.

I’m not really sure how to help with this new set up, but I desperately want to try and prevent anyone else from going through what we have.

any ideas are welcome.

wishing you all the best x

  • I’m so sorry for your loss, for those of us who were-and-are not caught early, tragic compulsions could’ve struck any-of-us at any time, your cause is certainly a noble one.

    For me I’ve skirted similarly fell conclusions, with such a frequency and consistency that, I feel an echo of that dark-shroud overcoming me as I try to write.  
    My heart aches for you, and for the fragment-of-the-memory of your son that you have shared, it can’t be easy navigating autistic children as a parent.

    Sometimes the simple things given frequently, are the very things that deter us from courting morbidity, kind-and-reasoned words and actions, from people who will never know how potent their actions are. I have been saved by good samaritans more-a-than-few times.

    I remember at 2300ish in the late December of 2019 I was sitting; as a 24 year old urchin, in a shared residence of the YMCA surrounded on all sides by anti-social teenagers, who knew that ‘their NEET TA’ had moved in amongst them; with the instrument of my mortal-infliction in my hand, when there was a knock on the door, followed by a muted-jovial murmur, I forced my mask onto my face and answered the door..
    On the other side were two YMCA housing officers with some Christmas presents; and not a late night inspection. I remember that with a stone face I accepted the gift and thanked them, they likely thought I was disrespectful, when actually I was committing the very air in my lungs to masking. 
    When I shut the door I felt numb, then anxious, so I cleaned my entire room and stared at the ceiling with music until I fell asleep. I didn’t open the presents for another two months.  
    Those staff members will never know of the straw that they took-off-my-back that night, they simply did a positive thing when no one was watching.

    Raising awareness for autism, and looking-out-for and distracting the quiet kid, is enough to make an immeasurable change, you likely will never be able to measure that change. But I can tell you that, losing hope that proactive and positive interactions will occur, as my anecdotal proof will tell you, is really the last thing that you lose before you cannot justify survival.

    Truly I am sorry for your loss. I am ashamed to say that when I was lost in the fathomless-and-morbid depths of my pain, I had forgotten the faces of my parents too, I had thought my end justified.  
    The comorbidities of being undiagnosed autistic, are what claimed your son that day, and are what would’ve claimed me. I thank and appreciate the efforts of my parents everyday, as your son would have thanked you, you do a service by continuing to proscribe yourself to this particular societal deficiency. GODSPEED.

    WITH my personal input aside; I think that the moonshot report by AUS comprehensively lays out most of the short, medium and long term obstacles to the liberation of the Autistic. 

  • Since my later in life diagnosis in 2021 here in the U.K. at age 52, I agree with everything you say and further, Covid has been used as another (lame) excuse - I’m still trying to find sources of post-diagnostic support while still coming to terms with my diagnosis and at my age, this is even more difficult when most of the services are geared towards children - it takes me back to when I first came out as gay in my teens in the 1980’s in Rural Ireland and it is a very similar experience - both Covid and the adult autism diagnosis combined with dealing with redundancy after 17 years, while separated from family in Ireland due to Covid lockdowns in 2020 have been far more difficult in many respects then being homeless for 6 months in 2002 when I first moved to the U.K. 

  • Giving Block is also a good way of accepting donations in digital currencies:

    https://thegivingblock.com/

    CharityJob might also be useful

    https://www.charityjob.co.uk/

    Hope those links help a little. All the best with it

  • Thank you for this post - can you provide any links? 

  • I'm really sorry for your loss. Setting up a charity in his name sounds like a lovely thing to do and would get alot of support i think. 

    The GOV.UK website says there are 6 steps to setting up a charity, here is the site:

    https://www.gov.uk/setting-up-charity

    I donate to 4 charities each month and i know many use Crowdfunder for donations so worth checking out:

    https://www.crowdfunder.co.uk/for-charities#:~:text=in%20your%20browser.-,The%20perfect%20place%20for%20your%20charity%20to%20raise%20more,fundraisers%20and%20create%20Prize%20Draws.&text=Add%20your%20charity%20to%20Crowdfunder,donations%20and%20fundraisers%20from%20supporters.

  • Mental health services do not have the training or understanding to know how to deal with us.

    This is my experience too. I like my community psychiatric nurse (who left her job last week) but i've felt for a while that she is out of her depth. I will meet my new CPN next week 

  • Far too often autistic people are sectioned and detained in totally unsuitable and distressing hospital environments.

    So so true. I was sectioned in 2017 following a mental breakdown and spent 5 years in hospital which was extremely distressing. The first year was the worst because i didn't know if i would get a long long prison sentence or a hospital order. Fortunately (although still horrible) the judge said i should remain in hospital because my mental health caused the offence. I don't agree with my paranoid schizophrenia diagnosis, i was autistic and none of my needs were being met and i couldn't cope 

  • The system failed us, but we mustn't fail ourselves. 

  • I am so sorry for your loss. Sadly far too many autistic people have their lives prematurely cut short through no fault of their own. The life expectancy statistics for autistic people are shocking.

    There is a huge gap in existing crisis services and the needs of autistic people are not being met. Mental health services do not have the training or understanding to know how to deal with us. Far too often autistic people are sectioned and detained in totally unsuitable and distressing hospital environments. Autistic people far too often become distrustful of support services, due to negative and traumatic past experiences.

    Many autistic people struggle with verbal communication and telephone communication in particular. I certainly do. Yet almost all crisis services operate by telephone. The Samaritans have an email service but the turnaround time may be too late for someone in crisis. There are limited text and live chat services elsewhere but they are not staffed by autism specialists. Suggesting to an autistic person in crisis to contact a friend, when they do not have any, may actually make the person feel much worse.

    Alexithymia may prevent an autistic person from identifying and explaining how they feel. Many of us have been conditioned from a young age to internalise everything. Therefore others can believe the person is fine when in fact they are far from fine. So many support services aim to help the person with their emotions and such help is very likely to be ineffective for many autistic people.

    There is a complete lack of practical help and support for autistic adults. If the person is capable of feeding and clothing themselves then social services do not want to know. Yet many autistic people go through life facing numerous problems and being discriminated against for being different. Those problems can seem insurmountable without any support or understanding.

    There was a post on here a while ago about a research group for a suicide prevention service, aiming to provide much needed practical advice for real life problems. https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/29529/comments-please-for-suicide-research-tools

  • I'm so sorry for your loss. I lost my sister to suicide, she was also autistic. It's so hard moving on from suicide but I think what you're doing is wonderful and want to wish you luck.

    People definitely need more understanding with autism, it is missed way too much.

    You could contact the NAS for advice and guidance, they might be able to point you in the right direction of who to contact.

    Google is a good starting point as well.

    Good luck.