Asd - what did diagnosis give you? Considering not getting dx for DS

[Lookslikerain]

Hoping someone can help and maybe share their experiences please.

DS is just 3. This week we had the first part of his autism assessment. Have the second 'play-based' session next week, and we get their conclusions the week after. For various reasons, DH and I are staring to question if we should get a diagnosis for him, or pull out of this process. I have left messages for his paed so I can voice my concerns with her and see what they say.

What has your DC diagnosis given you? We were told that diagnosis wasn't just about labelling him. It would help us understand him better and might be needed when he went to school. Has this been the case for you? I would hate for the label to hold him back. We just want to do the best for him. Any advice would be gratefully received. Thanks.

I dont think you have offended anyone lookslikerain we are a fairly thick skinned bunch on here

Proffs talk about labels all the time when it comes to Asd/Adhd etc We were told by a paed when Dd3 was 5 that we didnt want to label her!

I said that if a label prevented her from having seriously mental health issues as she got older then Yes we do want to label her!

If you want an informed decision then you have come to the right place, there is bucket loads of experience on this board. Far more than in any book or website.

Good luck whatever you decide to do

You won't get a dx unless your childs autistic traits are enough to affect their daily life. Yes, your child may/will change, but they will still be affected in one way or another.
DS2 who as ASD, when he was 2-3 I was sure he would get a low functioning autism dx. After waiting several years on a waiting list he got a dx when he was 6 of HFA. He has changed massively in that time from a non-verbal child who did not want to interact or communicate (and threw a tantrum if I tried to) to a child where the school are convinced he hasn't got ASD as he gets on with his work unaided (is considered G&T) and has a really good friend. Yet his ASD does still impact massively on him, just different to how I expected it too.

Ds1 and his friend were diagnosed at the same time. His social-communication issues had already been given the wrong label, 'Naughty child, struggling family' so re-labelling them 'due to ASD' was useful.

His friend's issues weren't showing much at school, so the parents deferred sharing the diagnosis letter until they needed outside input. So when the problems emerged, the right label was stuck on them straight away. He still doesn't get much help (compared to DS) but at least it's the right type, as his needs are properly understood.

I hope that DD's dxs will assist her brother in the future. I don't like to think about it, but there will come a time when DH and I won't be here. I think if DD had more siblings, it wouldn't worry me so much, but she just has one brother, and I want him to be able to live his life to the full. I am hoping that if she needs help in the future when I'm not here, the fact that she has formal dxs will make it easier for my DS if he needs to sort anything out in terms of services/care. Sorry, this probably doesn't make much sense!

The CAHMS doctor who diagnosed my dd said they can remove a diagnosis if it no longer fits when they are older.

Zzzzz, you are in a different position to most of us. Has it caused you more hassle not having a DX? I know you HE now, so the school issue is different, but would having the right DX (whatever that may be ) have helped?

The dx ds got has not helped him one iota at school :(

Do you think that's more down to the school, though, Badvoc, or do you regret getting the DX?

Both Ellen.
He has been to 2 schools and both were/are dire wrt sen/sn.
Difference is now I dont expect anything from them.
Life is better :)
I had a proper epiphany!
Just seemed so obvious to me suddenly.
After having spent years feeling angry, alone, devastated, upset, ignored, laughed at....you know the score.
It's pretty empowering :)
I home schooled too for a time and would again if needs be.

So, zzzzz, would you, generally, say that getting the 'right' DX, would usually be more useful than otherwise?

My DS was DXed 6 months after being referred and at 3.5, so I guess it was pretty straightforward and I've never had a regret that he was DXed so early. I've always found it useful as he doesn't PFN at all. But I can see that parents early on the path may find a lifelong disability DX frightening and the DX 'label' itself as negative. But I would always argue against that negativity from my own experience.

Your experience has been quite different, though. Would that make your default argument pro or anti DX different?

Tell me to bog off if that's too personal.

Badvoc, it's great to get more views on this, otherwise we can come across as being evangelical about DX as a board.

I would say diagnosis has helped by allowing me to claim dla and pay for dd to get extra therapy.

Therapy for dd I have SALT OT and community OT.

It is down on her medical notes so HCP understand and are better at dealing with injuries without distressing her.

The extra therapy is helping her to catch up with her peers.

I hope it will help with her statement.

I wanted dd to have the best possible chance and it has helped with the therapy to give her that.

People make allowances and it helps her as opposed to ds who I think has sn but is not yet diagnosed so when he has a meltdown people assume he is being naughty and deal with it differently so he misses out as tge meltdown then escalates. It would enable his teachers to deal with him better if they knew.

Imo any dx is only as good as the relevant authorities let it be.
I don't mean to offend anyone, but MNSN is full of heartbreaking threads where a child has a dx (or often more than one) and has SA and is still not getting the provision they need to be able to access either the school curriculum or participate fully in their community or in wider society.
As awful as the past few years have been for us, I am very aware that ds has very mild sen/sn compared to many and that we are lucky that we were/are happy to provide therapies ourselves/home school/move home to change schools etc.
Not everyone has that option.

Hi lookslikerain, it's hard isn't it? We were v reluctant to go down the diagnosis route when our son's differences were flagged up by nursery. However, we have gained so much from the asd diagnosis and subsequent support. He's 8 and in mainstream school and would not be doing so well academically or socially without support. He's one of those kids who people always say ''well he's not v autistic is he?' But without knowledge and support at school I fear his behaviour would have alienated teachers, parents and children, whereas now he is loved and his behaviour tolerated and attempts to meet his needs are met. Good luck with your decision.

For example...in the space of 4 months we had one paed tell us that a dx "would not help ds" and another "happy to dx"!!
What do you do?
School were less than happy that I got a private EP report done and I do really regret it.
Partially because it cost £600 that could have gone towards a therapy but also because the school did not provide any of the provision the report recommended and it told me nothing I didn't already know anyway.

Hi OP, we were in two minds when our Ds (AS,8) was 6 whether to have him assessed he seemed fine at home but school was a whole different ball game he was really struggling from the minute he started. We decided to go through with the assessment a) because we wanted to help him b) The school he was with pretty much dealt the hand of no Dx, minimum support c) We want him to understand why he knows he is different, he has said so many heart breaking things to me about what he is eg Geek, stupid, weird, not worth being noticed .

We were also told that in years to come (the mind can alter in many ways) if we feel he no longer fits his Dx we can take him back to see CAMHS and they would re-assess, which to me more relaxed rather than 'this is the Dx, it's for life, see you later!' IYSWIM