Help for the family too, after autism diagnosis

[1teabag0sugar]

NC for this.

Just a very quick one - has anyone managed to get help for the family after an autism diagnosis?

I'm just wondering whether the NHS ever offered help with the adjustment for family members most notably I'm thinking of siblings, and the parent's relationships.

It just seems to me that a lot of this is forgotten and often it is very hard and none of this is good for the little one who needs as much love and care as possible.

If you did manage to get help on the NHS, what did you do/say? If you went private for this, did it help?

What kind of help are you wanting?

I’m not sure if this is what you mean but many areas run groups e.g. early bird/early bird plus or Cygnet for parents of newly diagnosed DC.

Some parents refer themselves to their local IAPT service.

Not NHS but Scope run mentoring sessions for parents too.

There’s also social care assessments and young carer’s groups too, but these are not based on receiving a diagnosis, but needs.

A diagnosis doesn’t change your child though. They are they same child, with the same needs as before diagnosis, so I’m not sure why siblings would need support following an ASD diagnosis if they didn’t beforehand.

Thank you,

I don't think needs increase after diagnosis, but I do think recognition of needs does.

I just wondered whether there is support for the wellbeing of everyone around the child, because, as with many other things unexpected, it can impact other members of the family too.

I'm just thinking about that. Some marriages break down, some siblings feel left out. It's not easy, and I just wondered where others found help.

I'l look into those you mentioned. Thank you, it'll be good to check them out.

Life will be easier for everyone, and marriages less likely to break down and siblings feel left out if the autistic DC’s needs are met, so I would start there.

Your second message, with the huge dose of condescension and smattering of assumptions, is not what I asked for at all. But hopefully YOU feel better having sent it.

There was no assumptions and my post wasn’t meant condescendingly! I am sorry you feel it was. It was meant with good intentions. I was trying to help you otherwise I wouldn’t have bothered posting in the first place, with 3 DC with additional needs I have better things to do than post patronising posts. You posted about help for parents and siblings, I responded the best way of supporting them is by meeting DC’s needs the best they can be as that improves life for everyone. Sorry if you don’t like that!

For instance, so many DC are failed by schools and LAs which results in DC exploding at home making home life stressful and more difficult than necessary. At the risk of you biting my head off again, a more difficult homelife is obviously going to put greater strain on relationships and siblings. Many parents do not realise all the support their DC can get at school which in turn can improve home life - EHCPs/waking day curriculum/SALT/OT/MH therapies…, many parents are told of LA unlawful practices and don’t realise otherwise. Similarly, a child’s needs may be helped by a social care assessment and having respite - many parents are unlawfully told their DC aren’t eligible for an assessment or are assessed as not requiring support.

I’ve recently been told By a very experienced SEN parent (and I think it’s true based on my experience at the moment), the only way to get any support for your child is to get an EHCP. if you can get that in place, support can be listed on there and by law has to be carried out. Without an EHCP there is between very little and no support available.

My dc was diagnosed 12 months ago and we have had no support (including from school- I’ve applied for dc ehcp as school say there’s no need). We have had ‘crisis support’ but that is a phone call from the duty psychologist to get through the day rather than any meaningful help. Over 12 months later we are still on the waiting list for the course the local nhs trust run for parents of newly diagnosed autistic children. It’s just not good enough and we are not in a financial position to go private (especially as there are no guarantees a specific thing would work for our dc).

I do agree with @Imitatingdory in that if you can support and understand your dc better, then home life Will improve dramatically. We have changed many things this year and it’s far less stressful Now. Not perfect by any stretch and I do wonder if my other children would benefit from professional counselling, but for now, their own school have been really supportive to them which has been really helpful and the House feels calmer as I am learning how to parent according to Dc specific needs rather than how I parented the other dc.

It depends on your area some councils offer parenting courses or an early bird course which is an introduction to autism. A parenting and family support worker may be helpful. There's sometimes local charities that support. The Autistic Society have lots of information. I found acouple of Facebook groups helpful - ask the autistic adults and autism uk support group. I did lots of reading and engaged with professionals working with my son such as SALT and school senco.
What helped the most was accepting my ds for who he is and trying to ensure his environment works for him.

It has already been mentioned upthread but have you looked into Cygnet courses? DH and I did one last year and found it immensely helpful, and the people that ran the course were also very knowledgeable about support networks, courses for siblings, funding applications etc. Might be a good place to start?

Wow, how rude have you been to Imitatingdory ?

Her post - as always when she posts great advice on these boards - was well informed and clearly intended to be helpful and supportive.

Truely the best way to access support is to get your ear to the ground as to what is happening locally to you - and the way to do this is to get involved with anything where local parents are involved, and then other local parents will share other things that are happening that they have found supportive. There really is a lot, but it isn't National and isn't Statutory, but is made up of thousands of small parent support groups and then various 3rd sector support groups that are often only funded for a couple of years at a time. I could give you a list of those near me, but that won't help you wherever you are, unless you happen (like me) to be near a very active and supportive branch of National Autistic Society. or Resources for Autism. or Square Peg. or Sunshine Support. or Disability Resource Base. or Cerebra Research Project etc etc etc. There are Facebook Groups, coffee mornings, training sessions, information sessions, workshops with invited speakers (such as OTs and SaLTs), play sessions and all sorts.

Thank you Kite, I was only trying to help. Under a previous name I received advice and support from MN’ers I could never repay, now we are in a better position I try to help others.

Thank you all for these posts.

I came on here specifically to ask about help for other family members. And some good info has been shared. Thank you.

I will say that it is a little wounding to be told that I should be putting my child first. Which of us isn't giving every waking moment to that? I really didn't ask for that. I understand it wasn't meant offensively, so thank you for your advice.

There are other family members, too. I just wanted some insight there.

teabag that is not what I posted! Stop twisting my words. I posted other family members needs are more likely to be met if autistic DC’s needs are met, which actually is answering your question of supporting the rest of the family, and is 100% accurate.

Can you honestly say DC’s needs are met in the best way they can be and nothing can ever be improved on? Really? So you have an excellent EHCP with perfect wording/provision/therapy, an amazing social care packages and potentially CC funding depending on needs, DLA, support from all available national and local charities/groups, support from the NHS, Young Carers involvement, you have all the sensory equipment/assistive tech etc. DC could ever need. If home life is so difficult for other family members that they need support I doubt it.

Thanks @Imitatingdory

This was the kind of tone I inferred from your previous messages.

In my last post I thanked you for your advice as well as I speaking about the way it made me feel.

And you've come back with this.

Your previous post said:

Life will be easier for everyone, and marriages less likely to break down and siblings feel left out if the autistic DC’s needs are met, so I would start there.

Because, as with your last message, you assume my child's needs aren't being met. You assume that because I'm brave enough to enquire about the other family members needs? I don't quite understand that.

But fair enough. Thanks again for your response.

You may have thanked me in your pp, but you did not apologise for your, quite frankly, rude post, and it took over a month and two other posters posting they agree for you to even bother doing that.

Again, stop twisting my words. Where did I post you “should be putting my child first”?

I have not assumed DC’s needs are not being met. I have assumed there is potentially more that could be done to better meet their needs, because, well, unless you are an extremely unusual perfect parent who has strolled through the system knowing everything and receiving highly unusual utopian support there always is more that could be done, especially when home life is difficult. The 2 are vastly different, and I have yet to meet any parents, myself included, that can 100% say nothing more could be done to help (even if the help isn’t forthcoming, or is difficult and once weighed up considered unachievable). And no-where have I posted that that is a criticism of you. Can you honestly say, DC’s needs could not be better met. Have you already covered all the suggestions on this thread and more?

I stand by my post, life for all does improve, marriages less likely to break down and siblings feel left out, when the autistic child’s needs are met.

I thanked you. I didn't apologise. You still don't see my point at all, though I have tried can see yours.

If it validates you, which seems important as you imagined my apology and have referenced the support of another poster (who is familiar with you); you're right. There's more I could be doing for my dc. And when that's done my other family members will be fine....

Thanks for all your help. I won't post or read this thread again. Unfortunate as I'd asked for help. But oh well.

I did not imagine your apology, I specifically stated you hadn’t apologised! I posted “but you did not apologise for your, quite frankly, rude post”. And, in actual fact Kite and I don’t often post on the same threads, and when we have we haven’t always agreed.

You have not tried to see my point at all, And when that's done my other family members will be fine.... this makes that abundantly clear.

I see although Maryann1975 (who FYI I have never interacted with before - or at least not under that name) and Kite are of the same opinion you have not rebutted their posts.

Sorry @Imitatingdory you have had yet more rudeness from this poster. I feel bad for posting on the thread now and bumping it.

1teabag0sugar I don't know ImitatingDory at all, other then having seen her advice on other threads, which, on the evening I posted, was all sound advice - as is the advice she posted on this thread.

it is a little wounding to be told that I should be putting my child first
....well, it might have been, if someone had said that, but they didn't. You have twisted the sound advice you were given.

This was the kind of tone I inferred from your previous messages.
. The only "tone" I am getting on this thread is from your posts, OP

Like many other posters on MN, I have a lot of experience with dc with special needs, and I have never met a child, or family who feel absolutely everything that possibly could be in place to support the child(ren) with the additional need is in place. If you have found that in your part of the Country do please share where that is, as there are thousands of families who would like to move to this wonderful place with enough therapists, school places, out of school provision, respite, play-schemes, transport, finance, trained staff, trained and willing volunteers, equipment and everything else that would make life easier.

I do understand where the OP is coming from - DD1 needed a fair bit of support as well dealing in her own mind with her sibling's diagnosis when it came through.

I asked around and found a range of books, some factual and some story-based which dealt with autism from a female tween with autism kind of viewpoint which helped her process her sister's difficulties somewhat better. She needed that support and her needs met as much as her autistic sibling did.

Coffee I did not post the sibling doesn’t need their own needs met, of course they do. I posted the sibling’s needs are more likely to be met if the autistic child’s needs are better met. Rather different.

Better meeting the autistic DC’s needs would mean there was more time/resources/energy… to meet the siblings needs and support them.

Using your post. If the autistic DC’s needs aren’t met meaning home life is difficult (even if the unmet needs aren’t at home) how do you research resources/books etc for DD1 and find the time/right environment to read/go through them with DD1 and answer questions/discuss them so they don’t (using OP’s words) “feel left out”.

If you (a general you, not you in particular) e.g. make school life easier for your autistic DC the evening may be calmer (no coke bottle effect) and therefore allow you to spend more time with their sibling after school to read/discuss. Or e.g. if sleep is a nightmare and you wouldn’t normally be able to sit with DD1 at bedtime because you are dealing with the autistic DC’s lack of sleep/dangerous behaviour/meltdowns/anxiety (insert needs here) getting a referral to a sleep clinic or equipment or medication or an extra bedroom… may help give you time to sit and read/talk at bedtime.

At risk of taking this off topic now, my daughter has found Young Carers very helpful. In practice her brother's diagnosis did open the door to this for her.

As @Kite22 said, it's all about what you can find locally. Secondary schools may have YC, as well as community groups.

I think she would be better at a different school to him, too.

I wonder about whether consideration of the autistic DC should be where things 'start', and more specifically should this be the starting point for addressing other DC's needs?

@Samosamo

I wonder about whether consideration of the autistic DC should be where things 'start', and more specifically should this be the starting point for addressing other DC's needs?

I know DD1 just needed some help understanding behaviour which she viewed as "annoying" in her sibling (after the last couple of years of school closures and lockdowns - the annoyance threshold for the pair of them is very low at times) like her worry about times for things, and her sound sensitivity and getting upset when her sister was cross about something - once we had that in place, both of them were much happier in terms of the eldest understanding how to help her sister (they love each other to bits really).