What do you look for in a support group?

[streakybacon]

I'm sort of doing a poll on what people look for in an AS/ASD support group.

Would people give me a list (just bullets, nothing too detailed) of what you'd look for in such a group, what would make you want to attend regularly, what you would hope to get out of it. Also, if there's anything you like it NOT to have.

When I've got some comments I'll explain why I've asked.

Ta
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Not calling itself a 'support group'!! Yes, that's what it is, but does sound a bit, well, poncey.

But maybe that's my prejudice.

I would've thought something where people can access it easily, doesn't matter oif you're late - basically something that alleviates the stress of ASD parenting and not add to it.

this one could be contraversial - access for kids with some traits but without a full DX (my DS' only official DX is language delay with subtle social communication difficulties, which leaves us in a bit of a no-mans land)

otherwise

1. some guest speakers if possible
2. chance to hook up with parents of children with similar age/interests to my DS
3. chance to swap info about schools/services/Sn Friendly activities.
4. venue accessible on public transport.

What everyone else says. Also open to parents of any child with emotional behavioural or speech issues, ADHD etc. Cos as TC says, getting a full diagnosis is a bit difficult at times.

I've never had the guts to go to the ASD support group here because I don't know if DS is 'bad' enough.

ASD is such a wide spectrum it would be nice to make it explicitly clear if it caters for everyone, or perhaps just half the spectrum?

Also we have diff concerns at diff times of their lives, eg pre-school, primary-school, secondary-school. And what I'm really interested in is talking to people who have the same concerns as me, so maybe one session for 'parents of pre-schoolers' and another session for 'parents of primary-schoolers' or whatever....

If you get a guest speaker still leave plenty of time for socialising.

Structure: topics, speakers, inclusive of all on the spectrum plus those without DX (our ASD support group does not cater for severe autism, so we get no support group!). Make it clear beforehand who topics are aimed at.

Properly thought out but relaxed meet and greet. There is nothing worse than walking into a room full of strangers where people are sitting in a circle, either not talking or talking amongst themselves and ignoring you.

Total chaos

We have same problems finding a support group where we fit wrong dx or not severe enough or to severe lol pretty much the same when comes to any Sn events

Our local ASD group is great - we have parents of children all across the spectrum and it is very friendly but that is down to the two mothers who founded it, they have the right attitude and approach. I don't know how you would ensure that.

yes, make it clear who it is aimed at - our local (charity) support is pretty much exclusively for parents & their teens with AS while the NHS support/outreach focus exclusively on extreme behaviours & sensory issues (no dx required).

Tbh I can't really imagine accessing irl support due to practicalities (what do I do with my other children etc). What I'd really like is a list of local accessible facilities/services (e.g. hairdresser/swimming coach/riding lessons/dentist).

Agree with donkey - I mainly look for other parents with children similar to mine. Our local ASD support group (at least when I was going) was really an asperger's support group and so it was a waste of my time (couldn't join in general discussion and couldn't talk about ds1).

Also agree that talks need to be targeted. Friends have complained about going on courses/talks advertised as being about autism when the material was only relevant for the very high functioning. Nothing wrong with running such a course just advertise it very clearly and honestly.

Although I no longer go because of work the school support group was more use - mix of disabilities but similar level of need.

I think it's incredibly difficult btw to run a support group that caters to the entire spectrum because the needs from one end to the other are so different.

Ime what works well is arranging things like exclusive swimming sessions with unisex changing rooms which people can choose to access or not.

Our ASD group wasn't for us, all the other children seemed to be very verbal hfa, with their own challenges i'm sure but nothing like ds2. Most of their discussions seemd to be around supporting their dc high academic needs while accommodating their asd IYKWIM.

DS2 fitted best at his SN preschool group lots of various disabilities & abilities. Most of the advice and topics discussed was very general but as lots aimed at learning disabilties it was very useful although not asd specific.

Maybe opening it up to a wide variety including those without a formal dx would offer more diversity and therefore everyone would feel they fitted in.

This is a good start, keep 'em coming.

A bit more info - I'm talking specifically about an existing support group for parents only, nothing for the children (it's during school hours). They're looking to change the way they function and I'm looking for ideas.

Here's the clincher. If you were joining as a parent of a fairly recently dxd child, would you want to know the obstacles and difficulties that might lie ahead, particularly in relation to how services operate in your area?

Thanks for contributions so far

Your then going to run into what do people do if gave younger children so need to decide if your allow people bring toddlers/babies

Oh and specify where you cover etc especially if talk about nhs/lea I attended support group they had charity workers etc coming in talks about who to call nhs/lea for help etc holiday actovtird but was not relervent as I'm 3metres outside the boarder even though nearer ti their group than any others

A good opportunity for parents just to moan and listen to each other is often just as important as guest speakers ets, so some informal sessions are good too.
Ours invited "out and about" the carer, respite provider to talk to parents about what we needed etc.
Also booking the sen officer to listen to concerns etc

Thanks for all contributions to this.

The support group I'm talking about already exists and has been going for several years, run by a local branch of a national charity. It's always been a parents (and carers) group and that's been it's specific aim - to provide support, guidance and a place of respite for parents with children on the spectrum. Until recently the group was primarily for parents of children with AS but it's now extended to all ASDs. Occasionally there have been activities arranged, though this has depended on budget availability. I arrange ASD activities myself in the area but there have been very few takers within the support group so I guess there's not much interest. The group meets once a month and there is a creche for younger children, and the venue is on good bus routes so easily accessible. They have had occasional guest speakers in the past but generally they're quite rare.

The reason I'm asking for opinions is that the organisers are now looking at changing how the group functions. They've already combined AS/ASD together but their main aim is to make the discussions more positive, to the point where they are actively discouraging parents talking about negative experiences. IMO, a 'support group' exists largely to help participants through the bad times (we're unlikely to need support when things are going well) and those of us who have been around are feeling that this opportunity is being taken away from us.

What do people here think of this? Do you think it's important for parents to have this kind of outlet, or should they find other places to offload?

I very much appreciate what people have said so far and will use some of your suggestions when we discuss ways forward with the group next time we meet.

Why on earth would you want to make it more positive? That is very peculiar.

It's not a suport group if you don't support each other. I would defiantely expect to hear (like on here) 'warts and all'.

If I want 'pollyanna' I can talk to may family and RL friends :)

Exactly, Indigo. That's what we're so concerned about. Some of us have no other outlet and we need to be able to offload there. Tbh I've found it quite alarming how naive some of the support staff seem to be - they actually believe that the system works, despite all our collective tales of woe. One mum sat at our meeting last week, breaking her heart over the lack of support for her son's transition to secondary, despite all the meetings and planning and promises beforehand, yet they still expected her to find something positive to say. It was unbelievable.

The NAS? If so I found their paid staff fairly clueless. It was a large part of why the local group folded (lots of pressure from the paid staff without understanding why we were saying that we couldn't do whatever it was they were suggesting).

Free talking time should be a time for anyone to talk about whatever they want - no topic should be off limits.

Before plucking up courage to go , used to feel like 'will not belong there' as DS's issues aren't severe enough.

But when i got there i realised there were lots of children similar to DS. Many were verbal, with very varying abilities from what i could see.

DS didn't appear 'not severe enough' than many others (sorry about wording can't think how to write this properly...too tired today).

Thankfully you don't need to have a full dx to join.
Didn't know some groups were for dx children only that is the pits!

It's not the NAS, though I agree they do tend to expect the system to work and are a bit shell-shocked when met with suggestions that it doesn't. Some of their training seminars are page 1 handbook stuff, "have a word with the SENCo"/"talk to CAMHS" approaches, that assume those people (in all cases) will know what they're talking about.

enforcing positivity on discussions . I would be beyond livid if someone without a kid with SN said told me to be more positive at a support group.

We were asked by an NAS worker why we couldn't just shut the door and tell our children to stay out of the room if we wanted to have a telephone conversation. I am still laughing at that suggestion years later.

I think the organisation has failed to understand the how helpful it can be for people to offload.