To ask if it was worth getting yourself or your child diagnosed with ASD

[whatmorecanyoudo]

After forms, referrals, long waiting lists etc we finally got our diagnosis for our DC yesterday. We were basically told all their challenges which we already know, we will be sent a report of these in about a months time and were sent on our merry way. No additional support apart from being told to talk to the school about what they can do to offer support.

Was it really worth it? I now have to think how to explain the diagnosis to an already very anxious child (and at some point to the wider family). I know I am probably just a bit shellshocked by it all and, of course, I know really it is important to truly understand what is going on for DC.

Any positive (or negative) stories on the benefits of getting a diagnosis would be hugely helpful, or advice on what to do next from those with experience of this. Thank you xx

Yes but only because he's on the severe end of the spectrum.
Our daughter is mild and undiagnosed as we know she will lose SALT and CAHMS support if she gets a diagnosis.

Yes. It helps us better understand him and also I see it as future proofing. He’s flying at school now (Y5) apart from the social side and that is only going to diverge, I fear. If school know and we have a formal diagnosis then we are in a position to ask for reasonable adjustments. (And when he takes ‘banter’ literally (his current PE teacher is a pain this way) we are in a position to say ‘you KNEW he has an ASD diagnosis…’)

I’m asking this question to myself right now. We have the first paediatric apt for our 2.5 year old at the end of this month.

@Mummysharkargggggggg your reply is interesting. It seems likely that the CAMHs support my DC has may well dry up now we have a diagnosis as they are now the responsibility of the neuro team. But the neuro team don't offer any support like this. So we may have just lost the one bit of help we were actually getting! (hopefully this is me reading too much into the conversation we had yesterday and getting worked up over nothing)

Worth it?

I'm sorry, I know you probably didn't mean to be but that seems incredibly dismissive of autism, as if it's somehow an option some people choose.

My diagnosis gave me my life back. I can't verbalise that but if I knew myself properly I would have avoided many years of trauma. You cannot place value on knowing who you are. I thought o was wrong and defective and I was vulnerable. I got myself into so many awful situations where I really just needed the power to understand me to be able to manage what was happening.

For DD, she knows who she is now and is able to understand and work through her anxiety. When I say work through don't get me wrong she can't even manage school, but she can leave the house now which is more then she did before.

The power is great. Pretending it doesn't exist is dangerous.

Yes. Both my daughters are diagnosed, one at age 4 and one at 12. They are now 11 and 14 and there is a huge difference in outcome for the one who received a diagnosis and support from the start.

I was then diagnosed at age 34. It was life changing finding out why my brain works like it does. It laid to rest a lifetime of self inflicted / world inflicted trauma from trying to be something I'm not.

Can we get away from the 'end' of the spectrum thing? It's not a liner thing where we put people in order.

My daughters diagnosis didn’t change anything physically (she already had all the support anyway) but it’s about knowing for sure so of course its “worth it”

@sidewayswalking I'm really sorry if I have caused offence - I certainly didn't mean to. I am probably just upset and frustrated by the whole process and the lack of help we have had for years and worded my OP very badly. It feels like yet again we are just left trying to help her DC the best we can.

I don't undervalue the impact of autism as I see the impact it has on my DC daily and on others that I know who are diagnosed. I truely hope the diagnosis will help my DC in the way it has helped you. It was why I went ahead with it really so they would better understand themself and know that the challenges they face aren't their fault and that we could understand them better and access more support. I think I was just a bit naive that their might be a bit more help on offer.

It didn't change my DD's support but it has helped to give her a vocabulary to explain why she feels certain ways about some things. She's had a diagnosis for years but now she's 10 we talk (and read) more about it together and I think that is helping her.

So from a schooling point of view yes it was/is useful. Because he has the diagnosis there are now resources available to him.
For example his struggle to sit for long periods of time are viewed as a sensory issue not a behaviour issue.
His struggle to organise himself and his belongings is an area that needs resources. By putting in resources where he needs them means his stress/anxiety levels at school are manageable for him so he can learn and also not become overwhelmed. It doesn’t always go perfectly, but so far school has been a very positive experience for him.
Over the years I have come across parents who have battled with schools because although their child is struggling, they have no formal diagnosis of anything and so child didn’t get help they needed.

Have you applied for an EHCP ?

Definitely becuase it will help your child get the support they need, with a formal diagnosis she will be able to access services

@ExtraOnion no we haven't - when we discussed it with the school they said they were already 'meeting DCs needs' and so we shouldn't apply for one. We didn't have the dx then though of course.

@vickibee what services are there that I can access - any advice would be hugely helpful.

For us it changed everything and nothing at the same time when 9YO DS was diagnosed.

It has changed nothing day to day TBH. DCs struggles have mainly been around school and social interaction. At home we understand him and know how to manage his behaviour (will say more about this later).

It is an easy way for people to understand DS and for him to understand himself. It has opened doors to some things with school and now I don't feel quite so bad about needing to take him into the disabled toilet because he is too anxious to go to the toilet alone when I'm out with him. It has given us something to research and read up on and learn about ways we can help him ourselves.

It has also opened Pandoras box with my family because DS is exactly the same as a lot of my family. There are now adults in my family seeking a diagnosis following DS.

As someone who has spent 40 plus years never quite fitting in and never feeling understood, I feel like an autism diagnosis would've helped me so much when I was DS age. Now I just accept I'm 'a bit different' and run with it.

It’s ok. It was obvious from your first post what you meant.

I think if your child is in mainstream education and generally managing day to day, there is no help or support TBH. But my DS is given extra time for stuff. He used to get meltdowns when there were sudden changes , so school know how to manage that now. They just have a better understanding of him and his needs now.

In my opinion yes. From the practical element of ehcp , supportin school, from services etc. helpful in terms of supporting our son, parenting etc although we didn't need a formal diagnosis to do that. But also it's his identity everyone should know who they are.

Just to clarify, I'm not offended. I just don't think, and I feel really strongly about it, that parents should have the right to 'pick and choose' iykwim. If autism is suspected then an assessment is a basic medical need imo.

Apply for an EHCP yourself, you do not need the permission of a school. School will say “they are meeting the needs” - but who knows how long that’s going to go on for.
i didn’t realise this, and was about 18 months delayed doing it.
Now have a great report from Ed Physc (with lots of outcomes) which has now been translated into an Action Plan
Its not an EHCP, but, going through the assessment process has helped everyone’s understanding of needs,

Also - ED Psych told me that, once the diagnosis was there you are covers by DDA, and can start to request “reasonable adjustments” (again, something that may come in useful as he gets older)

I have one with ASD. I think it is worth it because then (as I understand it) the school has a legal responsibility towards trying to meet his needs and hopefully means that he can be better understood other than being labelled 'truculent; non-responsive' and as he was labelled (by the HT no less in his previous school 'Weird'. (For the record he's not wierd. He's fabulous).

It has also meant that we have been able to access other forms of support such as the Special Dentist who has been able to work with him and who has experience working with children and adults with special needs (my DS has sensory issues which means that we have issues around his teeth and going to the dentist) at all.

So far we have not sought out a formal EHCP etc but I know that this can be quite life changing for many.

I understand your frustration with the process though and understand just how hard it can be.

I was diagnosed recently as an adult, I had the assessment done purely because I think if we need to try and get DS assessed later it will help demonstrate a family history so we will hopefully be taken more seriously. Has made no positive impact on me at all, I knew I was probably autistic already, assessment was fairly traumatic and as there is no support or anything available in my area its really just a secret label. I might tell my employer if I change job, but I'm undecided on if that would help or not, as although work would be really supportive, people may make assumptions. Its also awkward as I know they automatically interview all people with a disability who meet the basic criteria so it will indirectly flag this to probably more people than I want to know.

However, it does make a big difference if they are still school/university age. They might not get much in the way of practical help from the school, but may get exam concessions, eg taking exam in a small room. There is a lot of funded support at university for young people with disabilities which is a lot better and easier to access than what is provided through most schools, so it may be worth it in the end especially further along in education.

Well worth it! School mall of a sudden got a LOT more understanding. CAMHS helped my child socialise better and they now have a nice friendship group. They had no friends before. It’s a very long waiting list but please persevere.

We asked our paediatrician to hold the diagnosis (He was a totally cut and dried diagnosis case) because DH wasn't sure he wanted DS (then 9/10) to walk through life with a label. DH and DS are very very similar.

The difference being that DS is disabled by his autism - it causes him day to day difficulty in doing things that are considered essential (social interaction, decision making, situational awareness, behavioural regulation).

We decided (as a result of continued issues at school) to go ahead. I came out the other end feeling a bit like you - I've got a piece of paper, now what? Well, kind of nothing and kind of everything.

DS is no less autistic because of his diagnosis.
His day to day life still has challenges far in excess of many of his peers. He has had no specific medical support.

What it has done is give him a language to understand himself and a sense of belonging to some abstract tribe (he doesn't want to hang out with them - he just likes that there are others out there).

It's given us the ammunition we need to get what we need from his school - support, reasonable adjustments, understanding, an arse kicking for the weasel children who try to bully him. It is a shortcut for new adults, clubs, activities etc to understand his need for individual needs assessments.

It's a weird thing, an ASD diagnosis and it took me a couple of years to feel that we did the right thing. Now I have no regrets - there are no downsides for our DS.

In terms of sharing with family, do it in your own time. Not everyone is going to cover themselves in glory and some people are going to surprise you on the upside. Take your time to work out what you want people to do/not do, how it relates to your child/their life/behaviour, so that you position the fact that your child has ASD to them where they're less likely to be shit (looking at you DPIL).