Anyone ever regretted their decision to get a formal asd dx for their dc?

[mysonben]

Asking this , as in just 2 weeks , ds 3.9. (verbal dx mild asd) has his 2nd appointment with the paed.
All the reports are in, and as parents we have been given copies of these reports (senco, salt, nursery teacher) DH and I were devastated with each report we got to read.
The agenda of this next appointment is to review the situation since last april, and decide what to do about getting a formal dx or not.
Looking at the reports , we feel that it's almost certain that the paed will want to push for a dx.

DH and i are trying to make a decision of our own, should we allow DS to be formally assessed should the paed recommends it?

Could a label of HFA or Aspergers ever be a hinderance to DS?
So many questions, don't know what to do.
And we know only us as parents can make this decision, we want to make the right one though.

Please tell me of your experiences regarding formal dx for your child.
Any regrets? Any positive outcome?
Thanks .

mysonben,

If the paed recommends it I would allow your DS to be formally assessed. Its bloody hard yes but I have never regretted my son being assessed for one millisecond.

You are your child's best - and only - advocate. No-one is better placed than you to fight his corner for him. There will be more battles ahead; you have presumably not gone down the Statement route yet with the LEA. Not just to say school, if he goes in there for instance without any support set up prior to Reception he could well struggle badly. And it is not related to just the educational side of things, its socially as well. I've seen this at first hand with other children and its heartbreaking frankly.

You need to see a "label" as a signpost to getting more help for him. Its not a stigma, your DH needs to get out of denial because his denial is affecting you as well. Denial helps no-one really, least of all your son. Its not going to change who he is (I said that to the paed at DS's last assessment) and you'll certainly love him just as much.

No label to my mind means no real support from anyone like school because he will then get treated the same as his peer group (some will be both nice and kind to him and remain so but some of them, particularly the spiteful ones, will focus on the fact that he is "different" from them).

I can actually look at this from both sides of things, as someone who didn't receive a diagnosis as a child and as someone who accepted the diagnosis for her own child.
When I was growing my parents knew I was different in some way, but they didn't know why. They knew that I rarely initiated talking, that I had obsessions, that I was constantly daydreaming, that I had social difficulties. They knew that I was naive and emotionally and socially immature. They knew I came across as aloof or shy a lot of the time, yet had a raging temper. They knew that I handflapped and talked far too fast and that I didn't say what I felt about something unless specifically asked. And when I was about 11 or so and was being seen at the local hospital for my height and weight (both of which were way under average back then) and the paediatricians started suggesting to my mum that I be assessed. She didn't want this, she thought a label would be detrimental to me and, considering the lack of understanding of AS at the time, she was probably right. So, she lied about some things about me and whilst that didn't automatically make me suddenly "typical", because I was very quiet and withdrawn I wasn't seen as in need of anything.
But does that mean that I wouldn't have benefitted from help? Unfortunately not. Whilst I was always different, the comfort zone of my small village primary school had passed by this stage and the increasing maturity of my peers combined with a far more confusing educational and social environment meant that I was having more problems, which impacted significantly on my life. I was very disorganised and, probably in hindsight overwhelmed by the greater size of the secondary school, and so struggled with remembering work, with doing it neatly, with getting myself sorted. I had detention after detention, especially as I couldn't eat in the school hall so ate in the classroom. Then I stopped eating my lunch altogether which wasn't the best of things given my skinniness. I spent virtually (and when I say virtually I mean in the whole of the 5 years aged 11 - 16 it's possible I spent time talking once or twice, but I can't remember it) every breaktime sat on my own, saying and doing nothing. I was bullied, mocked, seen as the sort of person you'd avoid and because I could not counter the verbal attacks and usually could not even reply I was seen as an easy target.
I've waffled on for long enough so will stop at this age rather than talking about my experiences as an adult, including now. So, in what ways did not havign a diagnosis help and hinder me? Well, the lack of it meant I still got labelled, I was called thick, stupid, a cretin, "aawww look at her" (this was when I was 14!). And unlike some people might think, I could not just "snap out" or "get over" the difficulties I had (and still have). It requires a great deal of effort, for example, for me to think about anybody other than my children and often my husband if they do not approach me. That's not to say I don't care about other people, I just don't think to think of them unless they make approach me in some way. That's why I favour forums I think. And the thing is, if someone is in the spectrum with AS then as they get older things will become even clearer as the gap between them and their peers gets bigger and the educational system they are in changes as well. It is one thing appearing to cope at the age of 4 or 5, when there is still a fairly wide range of developmental abilities across all children. It is another thing when the child is 14 and does not know or understand how to interact with others on a social level, or can't tell their parents they are in pain, or hungry, for example.
But not having a label did help me in some ways. Nobody ever told me I was different and because I did not think about how I compared to others it was never an issue for me. If someone had looked at every little thing I was doing and categorised it it would have been detrimental to me. I am very creative in terms of writing stories and poems and much of my stories have come about through my daydreaming. To be made to stop that would have harmed me. To be told to stop stimming, stop hyperfocusing on things, told that I had to "fit in" and therefore pretend to like things I had little or no interest in, would not have benefitted me. As I've become older have I suddenly become "typical?" Absolutely not. But I've found my niche, my own way of doing things and am very happy.

Nope, no regrets at all - if anything, it helped me, dh and other members of our family come to terms with ds's needs. The dx also gave us access to lots of help and support for ds which I doubt we would have been able to access without the dx.

We are fortunate in that our local borough (Brent) seems to take HFA dx very seriously including providing support for the children, parents, teachers and schools. I am not sure if there is anywhere near that level of support for children with other special needs which is really sad.

Hmm, I do wonder about the use of "in denial" in these contexts as I find it a conversation closer - a bit like saying "you're defensive". "In denial" is to do with inability to face the inevitable isn't it? And the whole point about a borderline ASD child is that nothing is written in stone (save the fact that you as a parent had better put aside your hobbies for a good few years!).

I share your concerns mysonben about whether some teachers would simply 'not bother' about DS in the way they might encourage him to participate if he wasn't DXed. I was also interested to read Niecie's post.

I guess what it boils down to is - you are at the mercy of how good a school and/or teacher is, DX or not. There are some fabulous schools and teachers out there and, let's face it, some bloody awful ones. And a bloody awful/lazy/inept/judgemental teacher is either going to go down the 'oh that one's autistic, no point trying' route if they're DXed, or 'oh that one's a problem/naughty/a bit of a dreamer/a right little nuisance, no point trying' if they're not. With a poor teacher unfortunately you are not going to win either way.

my sonben your ds is very much like my ds struggles socially has some sensory issues etc ok at home but falls apart in school setting etc to not dx would be just awful as he would be expected to act and perform the same as all other children and he would not cope

the best thing i ever done is got my ds dx all the help that has come with it my ds is like a different little boy and i know he wouldn't be without all the extra help that was put in at pre school etc and now when he starts school he has his statement they will be understanding to his differences he wont be forced in any situation his not comfortable with he'll be supported i couldn't ask for more , no one else need know about my ds at the school parents etc not because im ashamed but because i want them to know him for him first but peace for me and relief for him to have support while there he will only ever keep improving with the help

my ds is HFA and i know he may be treated differently in some ways only because his uncomfortable with some things but academically he is much brighter than children his age so they will be pushing this no doubt as on induction days were amazed with his skills and what he knows that he shouldn't know

the school his going to has good knowledge of ASD and good communication with parents and senco so needs and what can aor cannot do is taken into account and worked with

id rather this than him go in be expected to listen and do whats asked as other children do when he would be unable to do all this to express his needs his wants his worries to be understood by others due to atypical speech unsupported would be so bad for him wouldn't contemplate getting no help for him im not worried about labels etc i just worry about him a d want what's best for him and his future he came on leaps because of the dx and i know he will continue to do so as without that extra help he wouldnt be where he is now

i cant express that enough, a yr ago he was a different boy not wanting to join in or be with other children pre school worked so hard with him and by the time he left he was playing with other children joining in in group activity talking with staff expressing his needs

"Greenspan ... writes about how an ASD dx can make parents feel less able to engage their child."

This is what has happened to me, in part due to rather nasty PND but the label (even though it is still 'features' and 'possible') has affected the way I interact with ds I also feel totally disempowered to help him.

We will pursue the diagnosis because my constant analysis (obsession) of his behaviour (current 'autisms' are - language delay, not responding to name/commands, zoning out, inconsistent pointing for interest, tip toeing (started for the first time ever 3 days ago ), using our hands to point at things in books, hyposensitivity to sound & possible verbal stims) is having an adverse effect on all our mental health.

sadminster im sorry your feeling like this but i msut say i felt like this before dx as i so wanted him to conform like other nt children and this would depress me that he didnt the day he was dx i took him home and saw him so differently i understood why he did certain things and i couldn't have loved him more he is my bestest buddy with all the help is a different boy we have gained some sensitivities that i have struggled with but i understand them and am more relaxed in knowing hot to deal with him or leaving him alone in his room if needing it without feeling like a bad parent

a dx for us really helped i loved him before but love him so much more now as i can control situations that help his behaviour he has been helped loads by others which again has changed who he is for the better i found once his speech came along most of everything improved with it

Well my two's autism is pretty obvious so once we'd seen the paed for the initial appointment it felt like we were just going through the formalities to get the dx (moderate autism and moderate to severe)
I don't regret getting the dx for either of them because it gave me something to research and possible intervention therapies to explore.
I don't regret the hours spent on intervention as they have benefited enormously but I think we have missed out on family time and even now plan activities with learning objectives in mind.
I certainly don't regret the label for education as the label got my eldest into an outstanding autism resource and ensures my youngest has a statement to meet her needs.
Had they been less affected and not in need of statements I may have reconsidered though

Thank you all for your replies. It helps to get differents views and opinions

Niecie, i'm sorry the dx did not help your ds.
I totally understand where you are coming from about a 'label'in terms of 'will it help a mild asd child or will it become a burden'...
That is what is worrying us the most. Both DH and i totally agree that our DS has some issues, a major one with language but he is improving fast at the moment, a medium one with social skills and a minor one with sensory issues/ asd behaviours.
At the moment , ds is under salt (on and off block sessions) and hopefully a place for him in a special language group in a nursery that focuses on "pure" language delay/disorders , but no autism. SO we have been keeping quiet about the verbal dx of asd we got in april, because we feel DS would benefit hugely from regular salt input, fingers crossed.

DS doesn't need ABA, physio, lots of salt and maybe a bit of help from an OT, that's it. And patience from us at home!
DS will also be assessed by an EP regarding support / statement.

Like you Jeanjeannie, we are really unsure whether a formal dx will help in any way.

I guess we will need to discuss this with the paed.
I hate all of this , these decisions are hard to make.

Meant to say"...doesn't need ABA or Physio,..."

Sorry , missed out the second page before last post.

bullet123 thank you for your reply, very interesting as you've been there yourself.

amberflower you are certainly right about how children are at the mercy of a teacher that is "bad" or very inexperienced with asd, and alas dx nor not it would still have an impact on the child.

lingle your point about a bordeline child is a strong one, i agree too nothing is set in stone.

bubblagirl i think i need to refresh my memory about ds' struggles at nursery ...i mean i tend to forget because at home ds behaves 'better' and even sometimes think his nursery maybe is exagerating .
The biggest wake up call i had was when i went to observe him myself , needless to say i left heartbroken because it was evident that ds was different and was "behind" in many aspects.

If the paed does recommend a formal dx , we will have to really discuss what benefits ds will get out of it and i think everything will depend on the replies she gives us.

Thanks again for all your replies ladies.

i think like myself you need to remind yourself of the struggles your ds has outside the house pre school would not exaggerate they certainly didnt in my ds case and at home he could pass for nt few quirks but nothing like when in pre school setting

at home he may be fine but outside the house at pre school where structure needs to be followed and communication is important he will need more help HFA is not a bad dx to have ds has it it means his at higher end of spectrum bright and funny just in need of extra help

you have seen first hand his struggles if these are not dealt with they will get worse the longer you let them work to own agenda the more they will do so they need to be taught how to act , socialise, communicate and most of the times these settings are the worst

it is your decision but think less about the label but more about what help he will get and how far he can come with that help a label is nothing to be ashamed of or worried about if it means your child has more help to help them function more comfortably in society

maybe read through some of your old posts with his struggles and that may make it clearer to you that extra help would be a benefit not a hindrance

Bubblagirl, absolutely a 'label' is not something that i would (or dh) ever be ashamed of. And with or without a dx our ds will still be the same ds with his lovely eyes, his silly laugh and his funny quirks.
We will be taking the recommendations of the paed into careful consideration.
To be honest DH says he will not object to DS been assessed as he wants an end to his feelings of "is he? isn't he?", and me i want to stop analizing everything moves DS makes, maybe a dx will make me accept it all a bit better, because although i know in my heart DS has mild asd, i still hope i could be wrong and the thought of a written dx scares me as part of me doesn't want it to be true, iykwim?

I need to get a grip...

Thank you for all your advice. It's appreciated.

What BBgirl says - we got a lot out of having a dx. It didn't change how I view my son one bit, and I suspect it may have improved the way he is viewed by e.g. in-laws who thought he was 'naughty' or 'out of control'.

I'm too damned open not to share a DX with and sundry - another reason why I'd be the wrong person to go for one!

given the special circumstances of the language nursery placement I'ld be tempted to slow down the DX process until you had a feel for whether he was doing well in that environment (as if it wasn't appropriate then getting the dx wouldn't matter so much). mind you given NHS waiting lists in some areas that may not be an issue of you having to slow things down(!).

sadminster - IME it is hard to interact with a 2/3 year old with a receptive language delay. don't blame yourself for finding it hard. I had to alter so much about the way I spoke to DS, I had never been one for parentese, always spoke in "proper" sentences, I completely had to change my communication style.

If it helps mysonben - DS2 (8) was in ICAN Nursery due to s&L difficulties when concerns were first raised about him - so he was about 4 yrs old. We agreed to go forward with an assessment but when it came about, his s&L hadn't really developed sufficiently to get a dx of asd. So we went through the whole process again in 2007 when he was 6 and we did get a dx.

It was a worrying, scary and frightening process and I felt very isolated about it all. He now attends a s&L unit attached to a mainstream school where his asd quirks are managed very well!

I wanted to put into context my feelings around getting my ds's dx.

I agree with what Total says, there is no rush to this process. You can always make the decision to get him assessed knowing that you could have a long wait for an appointment and that would give him a chance to settle into nursery, etc, get feedback from staff ,etc.

I suppose the other feelings I have are about the longer term benefits of a dx - your ds will become a young person, teenager - with all the emotional upheavals of those years!! big school etc - would it be useful to have a dx to tap into services that he may require? I don't know but it's something to ponder.

Apologies for being so long winded!

PipinJo, I didn't say DS doesn't need any help at all!
At this moment in time he needs SALT badly (which he has been getting for over a year on and off), and he does need a few strategies at nursery, and possibly a statement in place for september 2010.
But i can't see why ABA or physio would be necessary for him.

StarlightMcK, well said.
I so wish i was a bit more assertive like you! I'm a pushover who worry about everything...

Can you really ask for a dx to be removed once it's been given?

No - you can't ask for a dx to be removed. You can't even get a misdiagnosis removed as a diagnosis is an opinion and not a fact.

You also cannot stop the decision being taken out of your hands if it is in the best interest of the child - i.e. school could start the Statementing process, in which the Community Paed would be asked to give their opinion / dx.

I have never regretted for one momment getting son dx'd. Without it he would have received no support whatsoever.