I feel a bit of a fraud

[tyres]

My son was diagnosed with ASD just after he turned 3. He had a pretty classic list of 'symptoms' then, no speech, no eye contact, certain sensory issues. The Paed diagnosing said he was faltering on the side of a severe language disorder, but went with ASD because of lack of social communication/interaction. Difficult for us but it was the 'signpost' for access to Portage, speech therapy, special playgroup, assessment for statement (not given), DLA etc etc.

Fast forward to age 5.5, my son has blossomed. He started mainstream school with no 1-1 support and his speech has exploded, he is great with his peers, his sensory problems have reduced (eg he went to the school disco last night - loud music, flashing lights, children shouting and screaming - and had a good old bop with his younger sister. Not possible a year or even 6 months ago), although still minor issues. Even his jumping and humming have subsided, and his getting off to sleep has improved. We still have a bit of an issue with pooing but we are getting there. He is also able to increasingly create imaginary situations, eg pretending his bed is a train and driving it along, stopping at stations to let passengers off etc.

In short, it's almost as if he's not ASD anymore. I am delighted of course, with his improvement, but feel a fake when people ask about him, and there is the usual, 'oh that happens with all kids' when you tell them of specific incidents, which makes me feel even more like I am somehow imagining it all...

I read of all the difficulties that people have on here and sympathise and understand greatly, but to be honest, there isn't much that relates to my son now. I am so proud of him, but am now wondering if indeed, he is ASD ? Is it possible for children to develop 'normally' after diagnosis ? Am I so used to his ASD that I can't see the wood for the trees and just take his difficulties for granted ?

I'd be interested to read if anyone has any similar experiences.
Thanks for reading (am on 2nd glass of wine btw so am feeling a bit emotional atm)

sort of in a similar position with my DS - severely lang delayed inc. receptive at 3, v. withdrawn, could spend hours staring at his toy cars, not toilet trained, dire sleep etc. By the time he went through the DX process at 4.2 they said "prob language delay" rather than ASD. He's come on very well since then, and done well in m/s school with bog all support (it's a small caring school in deprived area) still not 100% there with language, but improved enough to be discharged from SALT (mixed blessing!).

I know what you mean about feeling a fraud sometimes - compared to others that post on here but 1)I think as mothers we are permanently marked by the tense pre-school period when the difficulties became apparent and 2)we do get used to dealing with our children and as you say take difficulties for granted
3)I wouldn't say it's "normal" development - just more coming on really well with development - I think there are subtle differences.
4)Not to be the voice of doom, but from what others have said on here, the junior school years can be rather a challenge work wise/socially, infants tends to be a more straightforward place. So I think a careful eye does need to be kept iyswim.

Dunno if any of that makes sense, but hey, I need some wine now LOL

This can happen I believe, and if you read the book "Hear my voice", it does sometimes seem to be that a child will sort of grow out of autism, but only for a very small and very fortunate minority. It is great news for your DS - I guess my DSD would come into this category as she is now pretty much normally functioning, whereas was diagnosed as ASD at 3. The only things that still linger from her diagnosis are slight social issues, not quite understanding the minefield of teenage friendships or social customs! I also have another pal whose son might now have the label autistic taken away, and it is deemed now that he may "only" have had sensory integration issues, speech delay and dyspraxia. I would enjoy, not worry about what other people think!

Thanks both. TC your school sounds v similar to mine, as does S/L provision - well meaning but not much good really - my son seemed to develop of his own accord. You are also right about 'coming on' with development. My son has had a very disordered development but it seems to be evening out now. And of course you are right about what might happen later on. I guess there might be more difficulties when he moves into junior. ps - have that wine now - you know you want it !

sosce - I'll look for that book. And I am certainly enjoying - each new thing that my son does is a revelation and I am so proud of him being able to 'tell on' his sister when they are fighting, or telling me that he loves me (started doing that recently, for the first time).

I know someone who lost a diagnosis. And I know quite a few children who have developed dramatically between the ages of 3 and 5.

Enjoy! If you no longer need the diagnosis it will slip away.

sdmt, your last sentence has brought tears to my eyes for some reason. Perhaps imagining how my son might be in 5, 10, 15 years time, whether he will regress, or whether he will blossom, and also sadness at friends etc who have a much bleaker outlook for their children, and the fucking shittiness of it all.

Sorry, very emotional - bit of pmt mixed with wine - great combo eh ?

But thanks anyway - it's great to have completely anonymous opinions, makes me feel like I am not losing my mind !

sorry, it's called "Let me hear your voice" tyres, really great book!

thanks - will look out for it.

I guess this is the wonderful thing that happens with early intervention and wonderful support families well done and if he doesnt need the dx thats great, if he still needs tiny amount of support that great too well done to you and your DS sounds like you have done wonders for him

Thank god for early intervention , i hope i will be in the same position in a year or 2 with dd2 (ASD), her speech has come along so much in the past 6 months (from non-verbal to 200+ words). Dd1 was diagnosed with AS when she was 4, she's now 6 and shows less signs of having AS but is showing more signs of dyspraxia, most of her traits have vanished and she is doing well at school with no 1:1.

Dd2 has to see the pead in April to see if she will get a dx of HFA or AS (depending on her speech), at the moment she has an open dx of ASD as they said she was too young to say where on the spectrum she is.

Well done to your DS tyres.

I think it is partly down to early intervention, yes, but is also partly down to a good,old-fashioned dose of luck. My DS was not mildly autistic to start with (he was moderate to severe), so early intervention cannot make him mild. But I think a mild kid can be made nf with a bit of luck on your side. I just say this because there will be people reading these posts wondering and worrying that if they'd intervened early enough, their autistic child would now be nf - that's just not the case, sadly.

sose - completely agree with the dose of luck. I don't feel I did anything more early intervention wise than any other concerned parent of a language delayed kid, and at times probably less due to the horrid sleep issue (regular 2 am bedtimes at one point )

Agree with sick. Ds1 had intervention fro
age 2. He can't speak age 10 and I don't think anything could be done about that

Yes intervention helps every child reach their potential but you can't go beyond it.

That's an interesting post. I'm happy for you that your DS is making big progress it is encouraging. I think/hoping my DS could be heading the same way as yours.
At age 3 he was still very much at single words level, with a few 2-3 words sentences learned through echolalia. He was a loner at nursery, went through the same play routines day in day out, his response to voice was very inconsistant, he had sensory issues with noises, temperatures,... if DS would have been properly assessed for ASD then i have no doubt he would have got an autism dx probably mild though. We saw a paed last april when DS was 3.5 got verbal dx of mild asd.
DS is now 4.3 and is now going through asd assessement with Cahms, at first appointment autism team paed said DS has autism. I'm wondering if by the time he does his ADOS (in may-june) they will still think he has ASD.
We agree that DS has severe issues with language (but he is slowly improving), he also has difficulties with social interaction with his peers (pretty good with familiar adults though) but again there are been some improvements he takes more and more interest in what his peers are doing and tries to join in their play often in an awkward way but sometimes successfully, he clearly is enjoying more and more other kids company, he still has some sensory issues remaining with noises, textures, lights...he gets excited quickly and has tantrums, covers his ears,... sleeping is now ok, eating still a problem , but hot and cold sensory issues have reduced so much. He still however stims a fair bit when he is tired after nursery or anxious and becomes quite challenging.

In all he still has some ASD issues but they have reduced compared to a year ago. And he has more and more fairly typical NT behaviours.
I am asking myself the same question as you ...
Could all the ASD eventually go away as he grows up because he wasn't ASD to start with. Or is it because since the verbal dx, we as parents understand him better thus manage him better, also he has got into a language unit, senco and EP are involved at nursery to help...so all that is having a positive impact on his development and behaviours iyswim? or does we have got used to his quirks and don't see them as clearly as before.
I guess time will tell, especially when he starts school in September.

Sorry long reply, lots to write as i can relate to your post so well. All the best for your DS , i hope he continues to progress nicely.

Thanks for your kind comments. I agree re early intervention but I kind of think it only touched the sides of my son's ASD. It could so easily have gone the other way. I saw him starting school as a 'sink or swim' thing and I am sure there are plenty of other children in similar situations who are't able to cope with mainstream. The authorities, in their 'wisdom' decided not to statement him and see how he got on. A very risky strategy (not based on money - oh no), which luckily for them worked this time. And will it continue to work as he gets older and finds himself in more demanding situations ?

I reckon a lot of his amazing development can actually be accredited to my beautiful daughter ! She is a year younger than him and he is so comfortable around her, emulates a lot of what she does and they play brilliantly together. This morning they have been making pretend fishing rods out of Hot Wheels track and fishing for stuff from the sofa !

oops - loads of other posts appeared while I was typing my last one - will catch up !

I think saintly is right - that early intervention will unlock the child's potential, but can not go further than that potential. The trouble is that, because autism is seen as a single condition ( I think in a few years we'll find out that there are 100s of different conditions linked only very tenuously by the term autistic) every mum thinks that what worked for her kid will achieve the same results for another kid. I've been as guilty of this myself, and I have a HF DSD and a not-so-high functioning DS in my own life, so I can see only too clearly that what works for one will not work for another. I have done 400 times more interventions than were necessary for my (now almost normal) DSD, but my DS may never turn out like her. I think it is very very difficult to tell anyone what's best for their autistic kid, though I do still stand by ABA and fish oil!

oh sick I so agree about the 100's of different conditions. I am like a stuck record with that one.

I made the mistake of trying interventions that would never work with ds1 as he wasn't high functioning enough at the start. I realise now that when people say 'it works with non-verbal kids' there's a big difference between working with children who are non verbal and under the age of 5 (and probably would have developed speech whatever anyone did) and working with those who have remained non-verbal post 5.

I can't get fish oil into my son now, but when we could it did help! And ABA got him imitating age 7 which has made the single biggest difference in his life.

Lucky you

Saintly, vanilla flavoured eye Q fish oil in vanilla milk working for us. well shaken.

Hmmm

You know. i've heard of this quite a lot; its one reason why some promote diagnosis with ASD over autism as autism doesn't refelct soem children further on, doubly so when the DX is very early as many are moving towards.

I also think though that it is amphasic disorder, so some times are better than others (we see this very much with ds3; recently he ahs making giant leaps and now we are going down a whole new set of ASD challenges- a developing obsessi0on with pulling up skirts being a particular PITA!)

And again yes I find that I 'get used' to the boy's needs, so it is only when somethingh happens that I realise that my norm is not a general norm, IYKWIM. I'm quite used to obsessions and minimal sleep; doesn't mean it isn't there though, just that I am past notcing it.

I've tried them all leaving and have hidden plus where I can. He uses smell to understand his world a lot so never eats anything without smelling it if I inject fish oils into the centre of a cake for example he will ear around it and leave the fish oil centre.

I'm also a big beleiver in Autisms; I think I know what the difference is between ds1 and ds3's dx in causality but cannot prive it, think it's fairly unsual overall though (I have a beleif that ds3's extra symptomatology was caused by a head injury he had and that was dismissed by A&E at around a year, I do feel certain he would have an AS dx otherwise though, as he has sensory stuff aplenty)

But unless I win the lottery and can afford to fund a brain MRI then I can never know for sure.

SaintlyDame ds1 is very smell orientated with food and will do the same, we've alrgely got past overt sniffing but things like fish opils just won't go in, he can spot onions at fifty paces too.

For us, the only input that has amde a difference has been ds3's SNU placement as he is developing well there.

Are you sure you wouldn't get an MRI peachy? One was suggested for ds1 but because it would be very difficult and need a GA and be unlikely at this stage to indicate a treatment it's been put on hold for now to be revisited in the future. If we'd been keen I think it might have been agreed but we made it clear we were wary of invasive testing (I know an MRI isn't invasive as such but the GA would make it so and the discussion was whether to do a muscle biopsy as well which would be invasive).

Nope, not funded for ASD dx here apparently.

They don't want to Go There anyway as injury was caused by ds1.

I just keep seeing things that apply to DS3 in other areas- for example the new stroke care research, DS3 could sing before he could talk and I remember mentioning on here.

OTOH it isn't beyond the bounds of possibility that ds1 has brain damage either, indeed after his arrival it would be a likelihood, so both cases may have been pure bad luck and just triggered by that. Clearly there's sensory stuff, but that can stand alone anyway.

One day we will get an MRI done, privately, DH says he will pay as soon as nUni finishes and he is doing far too well not to get work (average 94%, I am hanging my head in shame for my grades now LOL). It just might take a while. And probably wouldn't make an actual difference, as of course he is who he is now whatever.