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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

Just received son's autism diagnosis

20 replies

alverson · 10/08/2023 12:15

After 3 years of waiting. It's been officially confirmed to us this morning.

Not sure how I feel. I suppose nothing changes for us really. It doesn't seem like there will be a lot of support now that we have the diagnosis, the general feel of the appointment was yes he's autistic now you go and get on with it. Was given a few leaflets and that's it. I don't really know what I expected.

Can anybody share their experiences of receiving a diagnosis for their DC?

OP posts:

jotunn · 10/08/2023 12:16

Same sort of thing really! In some ways a lot of things made sense and fell into place, in other ways nothing actually changed very much at all.

It has been helpful for DD to know though, and it has definitely improved her mental health.

cansu · 10/08/2023 12:19

I think it doesn't change anything other than to give you access potentially to support in terms of school or other services. It might also help the person concerned to understand why they have difficulties.

Original poster

alverson · 10/08/2023 12:20

My DS is only 4 so he has no idea. So many things are going through my head right now though, wondering what kind of life he will lead/how difficult it might be etc because of his autism. How do you tell a child they're autistic without them feeling different?

OP posts:

SleepingStandingUp · 10/08/2023 12:23

We had the diagnosis for Ds just before the end of term. I'm not really convinced as it only took a few months and we only saw the paed once but for us it's the difference of support as he progresses through school. Stuff they'd have initially blamed in age, he's getting to old for now so it's useful to be able to give an explanation

SiouxsieSiouxStiletto · 10/08/2023 12:23

We haven't got a diagnosis yet but we are expecting it.

Have you found the SN Children Section yet? That's usually very helpful.

Does he have an ECHP in please yet?

Original poster

alverson · 10/08/2023 12:26

@SiouxsieSiouxStiletto No we don't have an EHCP currently but the application will be submitted in September once he has seen the educational psychologist in his new school

OP posts:

Original poster

alverson · 10/08/2023 12:28

How do I move my thread to the SEN board?

OP posts:

jeaux90 · 10/08/2023 12:31

My DD14 has ADHD and ASD.

I had the conversation couched in Neuro Diversity and told her about people who were in the public eye who are ND.

As he gets older he'll find it useful to understand, my DD did a lot of masking in primary school it was exhausting for her.

As he gets older you'll have to make decisions about the right education environment for him.

It's a tough road, I often find it useful to remember that they are emotionally less mature too so I try and deal with my DD in terms of a slightly different lense than your average 14 year old girl.

SiouxsieSiouxStiletto · 10/08/2023 12:35

alverson · 10/08/2023 12:28

How do I move my thread to the SEN board?

If you report your own thread MHHW will move it for you but you might want to keep it here for traffic s d just have a nosey at the SN board?

PickAChew · 10/08/2023 12:35

Much the same, only it was in 2007 so that 3 years was more like 6 months. By 2008 when we did it all again with Ds2 it was already taking longer.

What it did give us was "official" information to support their SEN statements, at the time. We also got portage for Ds2 (not that he was having any of it) and then an early nursery place.

HerculesMulligan · 10/08/2023 12:37

OP, my son was 5 when his diagnosis was confirmed and even though nothing changed and we are pleased we got the diagnosis, it was a strange day.

We put together a little book for him to explain the diagnosis, and read it to him a few times. He's 9 now and keeps the book in his room, and occasionally packs it when we go on holiday, so there's something about it that is helpful to him. Happy to share it if you want to send me a DM.

YakChewCrumbs · 10/08/2023 12:41

If you try to find Neurowild on Instagram, she has a wonderful booklet on telling a child they are autistic. It may be more for slightly older children (maybe, would depend on the child) but it's fantastic.

PossiblyNotOne · 10/08/2023 12:41

We didn’t even get leaflets just the diagnosis and waved out the door.

It’s been helpful with school, getting a plan for the classroom, movement breaks, fiddle toys etc.

You can also use it to skip queuing in certain places if your child struggles to stand still. Lots of places have social stories, online information etc, access to ear defenders to make trips more accessible and easier to manage.

NImumconfused · 10/08/2023 12:41

DD14 got hers about a month ago. I don't think it will make much difference in terms of support (there's very little for older kids) but she's happy to have it as she says "at least now I know I'm not just being difficult!

If your child is just starting school I would hope knowing that he's neuro diverse from the start will allow the school to support him properly. DD has major mental health issues that largely stem from how badly her difficulties were handled by her primary school.

Simbaiamyourfather · 10/08/2023 12:45

I think I cried when my son was diagnosed even though I knew before hand it's still a bit of a shock to get an official document but then life just stayed the same for years. Struggling on, I didn't claim anything for years out of guilt a guess ( especially as he can mask so well) But a couple of years ago I applied for DLA and honestly it's been life changing for him, he was so broken and I had no idea. He would dread School holidays as he didn't have any friends so we used some of the money to take him away and build up his mental health a bit. Once his confidence was up a bit he started doing more , the money paid for activities and things like weighted blankets, special headphones etc... And now he's like a different child, he's made some friends, gets the bus on his own and becoming more independent. So my advice to you would be your right there isn't alot of support around but if you're entitled to something apply for it!

Simbaiamyourfather · 10/08/2023 12:47

Also definitely tell them the biggest issue my son had was how badly his self esteem was damaged because he was desperately trying to fit in and didn't know why he couldn't.

ntmdino · 10/08/2023 13:04

alverson · 10/08/2023 12:20

You don't, because he is different. More to the point, as he gets older - usually around 6-7 - he'll start to be very conscious about the fact that he's different whether you tell him so or not. However, it will likely make a huge difference to him to know why he's different; simply knowing there's a reason for it, and that he's not broken or a shit excuse for a human being, will definitely help. At least, would've certainly helped me massively when I was growing up.

Another thing to consider is that younger generations don't see autism the way ours did. Particular assholes aside, they seem to see it as no different to having red hair...if they know someone's autistic.

loislovesstewie · 10/08/2023 13:07

My advice would be to grab any help/advice you can with both hands. It's really in his interests to take that help. Claim DLA/PIP whatever it might be called, take extra help at school. If he as interests, no matter what they are , encourage them.

EilonwyWithRedGoldHair · 10/08/2023 13:21

DS got the diagnosis a couple of weeks ago. It was expected and a relief - though not expected to have it that day, but the school etc. were fantastic in documenting everything and really pushing to get him seen as quickly as possible, so the evidence was there.

He already has an IDP and is in a special unit as he couldn't cope in a classroom of 30 children anymore, and we have a number of services involved, but the diagnosis does open up access to some other services, which is what we wanted.

We're also looking at a potential dyspraxia diagnosis as well.

neverbeenskiing · 10/08/2023 13:26

My DD was diagnosed with Autism at 8yo. She was already very aware of feeling "different" and having an explanation for this has been hugely beneficial for her self-esteem. It has also been helpful for us as now we parent a bit differently and have strategies to help her, but we mostly had to figure these out ourselves by doing our own research.

When she was diagnosed the report recommended an OT referral, so we did that and some useful advice and strategies came out of it. It is a bit trial and error, all Autistic kids are different and you have to be open to trying different things until you find what works for your child and your family.

School have been great, she has access to a wobble cushion and fiddle toys, is allowed regular movement breaks. They try to prepare her for any changes in advance, which means less meltdowns at home. She takes part in small group interventions like Forest School and has regular time to talk about any worries with a TA. She also has a designated quiet space that she can go to at lunchtimes if the playground feels too overwhelming.

Get used to saying "that's not going to work for us", and don't apologise for it. Having a diagnosis gave me the confidence to do this with well-meaning friends, family members and professionals who were intent on giving me unsolicited advice based on their own experience of raising NT kids.

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