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.

Do not fear a label; the fear of same is always far far worse than the reality.

I have always seen a label as purely and only a signpost into getting DS more help and this has indeed been my experience of same. Some local services here too cannot readily be accessed without a formal diagnosis.

It can also give advantages for the child in school as it does not then enable staff in school to label said child "naughty" or "lazy" (a charge often levelled by some school staff at children who are dyslexic).

I think you only don't need a label if you withdraw completely from services, or control the provision. Both are very difficult to do.

A label is more like a 'key' than a tattoo. If you don't need the key then fair enough, but don't expect society to let you in without one. Not as it shoukd be but it is how it is.

I agree with poltergoose I hate the term label? I suppose you need to turn it around and ask what are the advantages of not having a diagnosis?

If your DS has asd he has asd regardless of getting an official diagnosis. If you think he is likely to need extra support as he gets older then a diagnosis is indeed the "key" (as starlight says)

I think if you are planning to put your son through the state school system you might regret your decision if he needs extra support.

I am hearing of more and more high functioning children whose needs are not being met in mainstream school even with a diagnosis and it is much worse for those with no diagnosis.

I agree with attila try to see a diagnosis as a signpost that points people in the right direction to support your son.

My Dd3 was finally diagnosed with Asd when she was 9 after 3.5 yrs of assessments and my parenting being questioned on many occasions.

Please dont rush into anything and remember it is your choice who you tell if he does get a diagnosis and he will always be your lovely little boy no matter what happens.

Good luck

DD got a diagnosis at 3.5. The assessment was totally driven by me - Pre-school had not flagged any issues. I could see DD was significantly behind in her development and worried how she would cope when she started Nursery. She had no extra help at Nursery School due to funding issues but we managed to get a lot of support in place for when she started in Reception class and that support still continues now.

At 3.5 DD was verbal although struggled to express herself or explain things, she was not toilet trained and struggled to keep on task without a lot of encouragement. She also found peer interaction difficult. She loved being around familiar children was not so keen on speaking to them!

Three years later her speech has improved so much but she still has some difficulties in certain areas, she is toilet trained (since just turning 5 years old) - a lot of the time she still needs adult support to interact with peers (eg she will not very often approach a peer to play but if the TA is organising a game she will happily join in with others) and again with keeping on task with school work. She has Motor Co-ordination Disorder so struggles with motor skills but again since this was flagged up (at 4.5 years) school and myself have been supporting her so much and doing so many activities with her that she has massively improved in this area.

To be honest if she had never gone to school I probably would not have bothered with a diagnosis as she is fine at home we have no problems (except food!) as such that impact significantly on our life but I knew she would drown at school without support.

It is a hard decision to go down the diagnosis route and whatever you decide I wish you the best.

Ds1 has been helped, treated with understanding, cared for, included, protected, been given many extra hours of professional help with everything from language to toileting to making friends.It gave all his extended family the confidence to deal with any problems we had in public. I think he would have had the opposite of all of that if he had no diagnosis and was approached like an neurotypical child.
We have chosen his secondary school -it was entirely up to us where he went because he has a statement which puts him at the top of every school's admissions policy-he only has a statement because he has a diagnosis.
I can't think of any negatives really.
Ds1 was dx at 4 and that was great because school could prepare for him and apply for funding to support him before he started.

Positives -- umm, where to start?

Specialist secondary education has been the biggy ( and this may look a bit remote when yours is only 3, sorry!).

For DS it meant a place in a supportive unit attached to a mainstream school, incidentally the best secondary in the area by miles, where he's just done rather well at GCSE and is currently flying in the 6th form.

It's a far cry from the 'worst case we've had to cope with' start to Primary.

Understanding from school staff (well some way towards it anyway) and the removal of the "naughty boy" label when he was silly and didn't do what he was told first time, couldn't kine up etc etc.
Usuing the diagnosis to research interventions that could help, and then being able to show the relevant research to school as "proof" that I knew what I was taking about and to get them to take me seriously and provide more support where it was needed.
To help ultimitely in getting a SEN and then our choice of high school ( better by far than the catchement one for DS) .
Understanding at OT appointement and other medical appointment where he was anxious and unco-operative, or hyper talkative.

We were offered assessment for DD (3.5) but asked for watchful waiting. DD will be seen again by the EP in a few months, she's on School Action Plus anyway and being seen by SALT and we I was finding the process so upsetting and stressful and destructive to my confidence as a parent and my relationship with DD that we had to stop. We may go forward with the process at some point in the future, we may not. I don't have a problem with the diagnosis per se, but the process.

A diagnosis has not held him back. A diagnosis has been the main thing that has helped him moved forward.
The word 'labelled' is interesting ... Because without a diagnosis, that is exactly what he got.
The ' labels' were things he got before he had a diagnosis to protect him and before people had the correct explanation of why he behaved why he did.
Labels like ' lazy ' , ' naughty' , ' disobedient', ' silly' ' dream world boy'
So he was diagnosed and he got help, yeah - Funding ,Access to groups,Support at school etcetera .... But I always say that for me, the main thing a diagnosis brought was protection from ' the labels'

We actively refused assessment for a long time - I think in part driven by us not wanting our dd to be different. However as she grew the problems increased and we ended up needing the diagnosis (age 10) to access the support she needed. The diagnosis has really helped dd- she feels there is a reason for her behaviour. In hindsight I wish we had been brave enough to deal with the diagnosis when school raised the issues with us when she was 5. The diagnosis process was horrible but the outcome was positive.

I would say continue with the process, but don't expect a dx to magically mean that provision is provided.
You may well still find that with a dx and even SA that you still have to fight for the provision.
Good luck.

Oh, and you have started early, which is key to any intervention.
:)

Please go through with it now. Your child won't be diagnosed if there is nothing to diagnose. If there is something there, your problems will increase. I waited too long. By the time I had my son referred last Easter, it had dawned on me that he really was ASD and I only got the diagnosis 3 weeks ago. Relations with school have been tricky and last year when he was in foundation was very hard going on everyone. He is being assessed for statement but I think by the time we have this in place we will be at the end of year 1. The process is horrible, there's no getting away from that, but to be going through it alongside school probs is awful. I am so glad that part of it is over. Good luck.

Others have already mentioned the advantages.

A label hasn't changed who my boys are. It's been a stepping stone to learning who they are, though.

And conversely, not giving a child that "label" (I hate that terminology being used to describe a diagnosed condition, as if it carries stigma) doesn't make the condition go away.

Just to put it in perspective, would you reject a "label" of visual impairment or diabetes?

At 3 DS was DX however it was hard for others outside the home to see why DS was different to other 3 year old kids,however now he's 8 the gap is huge.
Even things like having to go to a&e are so much easier with his DX as we are offered quiet areas ect ,he sees a special needs dentist as he can't tolerate even basic check ups (much easier to be referred with DX).
So while there might not be an obvious Benefit for DS it's all the little things that make DS life a little easier.
DS also goes to an asd specific school which needed a DX to attend but your Ds might be more mainstream so that might not be a problem( however at 3 i thought DS would manage mainstream well) :(

It depends how easy it is to get support for your child's needs, I think it is rare but my ds got one to one support from nursery attached to the school right through, salt in school and at home, access to early years support teacher, OT, from nursery age onwards without a dx. Just having a brilliantly proactive school. They tailored support to my ds's needs. I know people who have dc who got extra support in early years, but didn't go on to need dx, even though they were being pressured to get one.

My concern with my ds is that dated attitudes to ASD can lead to some teachers having less academic expectations of him, plus a lack of understanding of his educational needs. Sadly we moved house and LA recently, a dx seems to be the only way to get support for my ds, and although just before we moved we got a dx of autism we are having to fight for him. It is the school your child goes to that will have a huge impact, dx or no, a school might not have a great reputation but they might get your child and the support could be great - though the way budget cuts are going this gets continually harder.

My ds's new school has an inflated opinion of its attitude towards ASD & ASN, I don't think they are so great in practice. Be open to getting support for your child, start talking to her future school, make sure she gets extra help with transitions, in theory a child with ASN should get help without a dx but it is not always the case and you have to be prepared for that. Have a very good relationship with the school, get involved with parent council, go to anything they invite you to, just to get to know them, and they will get to know you and your dd too.

It hasn't really given me anything, well a shiny letter and a shorter explanation of DS's issues I suppose, lol.

It's given DS loads though - he's comfortable in his own skin, which is a massive plus, he knows exactly why he's not like the other children in his class and he's ok with it because of the other big thing it's given him... a peer group. For me they're reason enough to be glad he got a diagnosis.

He was diagnosed late, at 13, he'd been in the system for 6 years but they took their time deciding exactly which diagnosis they were going to give him and by that age he was painfully aware of the difficulties he had and it was impacting his self-esteem massively. It's been amazing to see how much happier he's been since he go his diagnosis.

Yes he's received a bit of extra support at school and been able to access autism specific provision that he couldn't before and now that we're looking at either university or college it will be massively useful to get some support for that, but really the biggest thing is that it helped him understand himself.

I'm sorry if I have offended when I used the word 'label'. I didn't intend to. It was the same word that our paed used when we saw her for the first time last year.

With one breathe, we are told how young he is and how much he can change, and in the next breathe they say we should have him assessed. I'm trying to do nothing but the best for my boy, but I'm struggling to see how they can guarantee that the diagnosis made now will fit in the future, given how much he could change. I thought that by having a better understanding of the benefits of a diagnosis we would be making a more informed decision. But again, I'm sorry if I've offended.

Don't think for one second that because you don't have a medically recognised label you won't be given one anyway at some point. No diagnosis still means you get a "label"- as being a "bad child", from a "bad family". The undiagnosed kids are the ones who find themselves permanently excluded in Key stage 1. SS may be called in to sort out your "poor parenting" at some point as a worst case scenario.

With a diagnosis - the fight for support is easier, but most importantly attitudes from adults (teachers etc as I don't give a flying fig what the general public thinks) are supportive rather than condemning.

It was the same with my sister who has a totally unrelated but very severe neurological disability. Noone gives a monkeys that she attended special school sor a few years now she's a University graduate, yet she would never have got there without appropriate support at the right age.

It may be worth noting that as an adult whether to disclose her label to employers etc is 100% her choice & that those very, very few careers where her disability does count would rule her out anyway at the medical (e.g you can't be a pilot if colourblind, you can't teach if you have TB). My ex-MIL is a Primary School teacher and on the spectrum.

Yes they can change - there was a lovely post the other day about a child non-verbal at 4 who thanks to the right support is now winning poetry competitions at 8. Isn't that what it's all about - helping our kids reach their potential?

Hi you haven't offended me op, I totally get where you are coming from and I felt exactly the same as you. But as they get a bit bigger it becomes more obvious and strangely as my son got more speech it also became more apparent that he did have ASD. I also started fretting about what if it was being caused by a more serious medical condition and then people, strangers really, would ask me if he had autism and felt like an idiot for not knowing the answer. Also the silly comments and judgements from others, that don't stop but at least you k ow it is their ignorance!