Starting a support group for young people with autism

[Lizzo30]

I am seriously thinking of creating a support group for young people with autism in my town my daughter has autism she is 25 I would appreciate any advice and name suggestions

[kenster1]

my son is 14 and autistic it`s a shame as there is nothing near that he can join or take part in with likeminded kids. I think it`s a good idea not just for autistic people but with disabilities in general.

[Lizzo30 in reply to kenster1]

Hi Kenster I think young guys and girls with autism need a social space where they don't feel different I'm hoping others with autistic sons and daughters will want to get involved in running it if it ever gets off the ground

[Arcticwolf]

I find there is a lack of peer to peer support groups with austim. luckily cloverleaf has started one in my area but once that contract ends this area is going be in the same boat so i suggest you start one. How about you go about starting one i have no idea. But i can ask cloverleaf the same question and get back to you.

[Lizzo30 in reply to Arcticwolf]

Thanks Articwolf I'd be grateful for any advice I'm thinking what would be good is having premises in the town centre with a charity shop in the front to fund it then a social area in the back

[Bee-bop]

You could try the autistic society they may be able to help wih setting up a group. We do have one in the area but my daughter doesn't want to go to it. In lockdown I found a parent set up group somewhere in the south but couldn't join as too far away. You could maybe Google and ask them how they fid it. Also, our Dr's have a pin board and groups for pacific conditions post on there. Maybe that could be a starting point? Or the local CAMHS. We also have a social prescriber at the gp practice who can find out what is available or could maybe help with setting up. One of my daughter's has Dyspraxia, Dyslexia and Dyscalculia and struggles socially but, loves animals and wildlife so the SP looked into this for her.

Let us know

[Lizzo30 in reply to Bee-bop]

Thanks Bee-bop my daughter has spent the last summer stuck indoors due to social anxiety she asked for medication to treat her lack of motivation which had a bad effect on her and ended up getting sectioned so is in a local psychiatric ward maybe it sounds bad when I say at least she is amongst people now for a month but it's how I feel She has been sectioned before due to PMDD and was misdiagnosed with schizophrenia I wrote letters pointing out STOMP which has made a big difference

[Bee-bop in reply to Lizzo30]

Hi Lizzo30,

Sorry to hear about your daughter getting sectioned although I can understand how you can see it as a positive too. I hope that she's getting good quality support while there. Misdiagnosis is common I have read and I feel that it is often up to us parents to object on our childrens behalf. I had to look up STOMP and I am glad that something is in place to protect the vulnerable from being over medicated.

I was interested to read your daughter has PMDD as my daughter also has this. It was a pastoral care worker and myself who noticed a pattern forming when her mood would change and she'd react in very negative ways at certain times of the month. Like other things, her sensitivity is heightened and she is also in a lot of pain with it sometimes too.

My daughter doesn't go out much either but, she is doing better at present. We go out early to avoid crowds and stick to places she trusts but, we are going to try going to see her sibling in a play soon which will be totally out of their comfort zone so we are doing damage limitation beforehand.

[Lizzo30 in reply to Bee-bop]

My daughter has Evening primrose oil capsules a week before her period is due bc it sheds the lining of the womb ( I take it to prevent hyperplasia of the womb ) then flaxseed oil capsules for a few days to build up progesterone STOMP changed everything - I could write to psychiatrists and point out STOMP which made them stop prescribing strong antipsychotic drugs for our daughter bc NHS pledged to the gov it would observe STOMP

Glad your daughtet is doing better and hope the outing to the play is enjoyable

[Bee-bop in reply to Lizzo30]

My daughter takes omega 3-6-9 but haven't tried evening primrose oil. There's glaxseed in skme of the omega. Do you think it helps your daughter?

[Lizzo30 in reply to Bee-bop]

Hi Beebop did you mean flaxseed ?

If so yes flaxseed oil is good bc I believe it helps to make progesterone which is calming Evening primrose oil is good to bring on the period so to take it a week before and flaxseed oil a week before as well but flaxseed oil is good to take during the period too.

How it seems to work is during a period the lining of the womb sheds and it's full of progesterone which is calming

The reproductive part of body then steals progesterone from the adrenal glands to make up the loss

But the amygdala suffers from this steal and has no calming progesterone that's when things can go bad for mental health

Hope I've explained that ok it's the same for postpartum psychosis - the placenta is full of calming progesterone so after giving birth there is a big drop in progesterone that can result in PPP something to bear in mind for PMDD sufferers

Natural progesterone cream is good I am always asking my daughter to have it during her period

Sorry for late reply I didn't get a notification

[Bee-bop in reply to Lizzo30]

Thanks for the information Lizzo30, that's really helpful, I will try to work out helping my daughter with her progesterone levels.

[Saju21]

speak to the council and see if they can support/ advise especially the support teams for autism. There is a group for females in my area but started too late for my dtr- as she had gone too far in her isolation and too much of a challenge for her to do so. Also most who attend don’t go to school and it’s during school hours. Think if mixed sexes or single and for safeguarding you will probably need to be 18+. And you need to find a venue to host, what will the activities be, you will probably need a host or two. And insurance….

[Lizzo30 in reply to Saju21]

Thanks for all that Saju21 is your daughter at home living with you ? Our daughter is difficult to live with but I don't want her to be a hermit in her flat.

[Saju21]

yes dtr in last year at school she has suffered since starting secondary and only diagnosed a few years ago with support of private school otherwise she would have been abandoned by the state.