Does ASD get better or worse? For kids and their parents?

[WorrierPrincess]

Hello, I'm new here and desperately in search of wise words. Any help/thoughts would be so hugely appreciated.

DS, nearly three, is having his assessment for ASD in a couple of weeks, and I'm really struggling to cope with it all. Hiding upstairs crying, actually.

If I was being sensible and grown-up I'd be focusing on the positives. He's verbal (very), bright (paed has already said no apparent learning delays), affectionate (to us, fave carers and DD) and although he has certain things he's into to an unusual degree (certain songs, games, tv shows, trains, numbers, the alphabet etc.) he doesn't seem obsessed by routine and regime and isn't fixated on just one thing in particular. He also deals just fine with the new and unfamiliar (holidays, trips out, different foods etc). He's not violent, either at home or nursery, and any tantrums blow over pretty quickly.

The problem is, I'm just crap at being sensible and grown-up. If anyone's obsessed it's me: I watch him for evidence to file away in the box marked "ASD - life is over".

Realistically I'm sure he IS on the spectrum: poor social skills, strange use of language, echolalia, quirky interests, little understanding of conversation, unwillingness/inability to follow instructions, answer questions, recall what he's been doing etc etc.

What I'm really struggling with is the uncertainty: what does the future hold? Is he going to improve and be able to lead an independent life? Or are we teetering on the brink of a regressive decline, where he descends more and more into himself?

I guess what I'm asking is really this: I think our son is somewhere on the spectrum. But is his little spot a fixed shade? And is there a risk it could get gloomier rather than brighter?

Be honest please: what's your experience been? And thank you for reading this.

I think many of us (well, me anyway) would say that the time around the dx is the darkest time OP. The time when you actually have to face up to your secret fears, the one you've been pushing down inside you for years. It's also the time when I felt so alone, particularly as DH was a 'och no he's just a wee bit behind' when I was - to stretch the analogy - borrowing the Rough Guide to Holland and trying to learn Dutch.

But it does get better, and whatever life or the dx throws at you, you will get through it, as will your DS. I don't mean 'it will all be fine' but I do mean 'actually it will never be worse than this point'. Cold comfort, maybe. But once you know, you know and knowledge is power.

That all said, please don't ever worry about blubbing or coming on here and posting about that sort of thing. You'll usually get a few supportive posts before someone comes along with the and shakes the blues out of you

stabby thanks so much for sharing. I grab on to every little new thing and do a little jig (internally where possible, I try not to draw strange looks more than strictly necessary). Hearing questions really gladdens my heart too.

At the start of the year I finally got DS to ask a "what" question by playing a game I'd found on an Internet site for engaging ASD kids. It basically involves putting objects in a bag and encouraging child to ask what's inside, then you pull object out with great flourish, whooping etc. Anyway after much demonstrating, DS finally deigned to join in but only while squeaking the phrase "what is it Mummy?" in what could only be described as a pisstakey approximation of my voice. The fact he always laughs at the same time gives me the unnerving feeling that he's on to me and thinks I am quite, quite mental.

Anyway I am so glad your DS is answering you more and more. And I will keep on asking mine too.

Fiolondon I asked for the assessment. There were a couple of concerns about motor skills and DS 'being a sensory child' raised by the junior nurse at his 2.5 yr health check. (He wasn't very interested in her toys, and kept getting up to muck about with the taps and door handle).

These concerns got overruled by the senior HV (according to her, DS couldn't possibly have any issues because she said 'hello I'm XX' and DS looked up and replied 'bye-bye XX' - his way, at the time, of saying eff off, basically)

I was so thrilled he'd "officially" passed his 2.5 yr check that I clung to her verdict for a bit. Then I started getting, by turns, frightened, angry and exasperated that DS wasn't magically turning into All The Other Children (a phrase that DH quickly came to loathe - he wasn't as concerned as me).

GP only agreed to refer DS to put my mind at rest. However within 10 mins of meeting him, the paed announced 'I'm 70% sure your DS is HFA". Then as my world came crashing down he launched into a monologue about how DS would be high functioning, 'just like Bill Gates' and by the way did I know about all the amazing work BG had done in the Third World....? (Clearly it's not just people with ASD who have issues with reading facial expression and responding with appropriate empathy).

We have since seen a (much nicer) paed who has agreed there are 'autistic traits' and wants to move onto a further assessment with SALT and OT as well. So that's where we are. Where are you?

WorrierPrincess, I love your description of your DS squeaking a parody of your voice (and your username!) My DS has also had an initial assessment with the paediatrician, in which he spent a lot of time examining the foot-controlled pedal bin to see how it worked. (And the taps. It was a very bare room.)

You're so right about grabbing on to every little thing. It does sadden me occasionally that something I am really excited about, and are desperate to tell DH, is usually something that would probably be considered trivial and minor to anyone else. Like the time a classmate tripped over in the classroom, and DS said "Oh! X! Are you okay?" His teachers were bubbling over with genuine joy when they told me, they get a lot of pleasure out of seeing his progress. When he started at school he wouldn't look at or talk to anyone, and moved away when the other children came near him, so he has come very far in that respect. Today he saw a classmate outside the school and actually said, (without my prompting) "Hello, Y!" and waved.

It sounds like you might not have expected the paed to suggest HFA - or more like confirming your suspicions? I don't want to poke a sore spot, sorry...

Stabby it sounds like your DS is making really encouraging progress. I would be thrilled with an "Are you OK?". Bless DS he does try though. Apparently yesterday he said to another preschool boy "it's nice to see you today, X". Of course it's hard to work out whether he's saying what he really feels or if he's saying what he's worked out is expected. Mind, that goes for men in general I suppose.

Re paed's comment, to be honest I've suspected autism for a long time. But because other so-called experts (and DH) haven't seen anything to really concern them it was just so shocking to get the "70%" verdict so instantly. Especially as he hadn't even tried speaking to DS (who can be beautifully interactive if somebody takes his fancy) and also because I don't think paeds are even meant to issue such life-changing proclamations on visit one.

I really do think DS is autistic. But I was really angry this bloke didn't even give him a chance to prove he's not, if that makes sense.

Plus he spouted a right load of bollocks. Apart from the yawnsome run-down of Bill Gates' good works for charidee, he also claimed that the reason DS isnt violent is because I'm a good and patient mother. Hahaha!

I'm not surprised DS didn't want to talk to him.

Not sure if anyone has on this threat has mentioned the National Austistic Society's course Early Bird which they do. I did it with my dd but it was a bit too late I Knew everything already that the course was teaching. It's really aimed at 3,4 and 5 year olds and it is so amazing. It will help you to understand while they are at an early age how to deal with them and the reasons for their behaviour.

The one thing I have always said to parents with a newly diagnosed child is to get on this course ASAP. You will find out so much of what you need to know and it will give you the frame work that will help you be an effective parent of an ASD child.

It has become so much better for me and my dd because I know that she is amazing and has come on so far from the child I feared she may be, on diagnosis. It's an adventure, strap yourself in!

OMG this is amazing. Completely new to all this so please bare with me. 18 months into diagnosis, still being treated for PTSD from birth and depression. Was advised to have a look on here and I just can't believe it. Already feel less isolated and think that there may just be a light at the end of this long dark tunnel. Not sure where we are on spectrum- some days much better than others but still so confusing and not consistent. Have done Earlybird which did help us but other half still not coming to terms which doesn't help anyone. Feel like I may be able to talk to someone now! Thank u all!!

saraellen it's been really helpful hearing everyone's experiences and talking to people who understand. At the moment it's tough meeting up with my antenatal group friends and hearing them talking about what their nearly three yr olds are doing and saying. They are lovely people and definitely not smug mum types but when one of them says "oh isnt this a lovely age?" I stare at my coffee and feel the bitterness building. And I want to be a better person and a better mother than that. Coming on here is undoubtedly helping me get some perspective, along with hope for the future.

Will definitely look into Early Bird.

U totally hit the nail there! We really didn't get on well at play groups which was pre diagnosis but pretty clear at that point that things weren't"normal". I didn't have anti natal group as I carried identical twin girls so even my pregnancy was different!! I do feel very isolated as we are never invited for play dates or to any parties. Kind of a relief but still it emphasises how different our life is. Listening to mums at the pre school gate I hate to admit it but I do envy their "normality" and I suppose the romantic ideal of what I thought I was getting.
Wow just read that back and I feel really terrible that I just admitted that - sorry

Don't feel bad saraellen, we do understand. I think personally it is normal to feel envious of parents who are experiencing the parenting that we expected to have too. Another mother of an autistic child said to me recently that she is still grieving the loss of the child that she thought she had, and I understand her feeling totally. Although I love my DS dearly and honestly wouldn't love him an iota more if he was NT, I still feel desperately sad that he is different from the child he could have been, and will face sets of challenges that I can only try to imagine. I do try to look at the positive things and to avoid viewing his autism as disastrous, but... well.

Yes definitely do the early bird course. It's so useful and a right insight into how they think and see the world. I have a 6 yr old with asd and 4 year old twins also with asd. Life is certainly challenging and never dull that's for sure. Yes it's very hard having a child who's different and even more so when friends etc have neuro typical kids who don't understand your situation but there is plenty of support out there for and you are not alone.

One suggestion would be to try applied behaviour analysis with him. He's young and you will see he will thrive and a lot of these behaviours will be dealt with in time. My son is nearly 5 and started 3 weeks ago and we can already see so much improvement it's fantastic. I was sceptical to start with but a lot of us here are running part or full time home programmes. If you want more info please do contact me privately I will give you the name of a consultant who is terrific. Don't believe what the nhs, school systems says. They don't know what is best for your son and mainstream schools are not well equipped to deal with him but it is possible nowadays to negotiate with schools (with fight with lea sometimes) when you want ABA therapy across home and school.

The expectations of educational system and NHS is low for our kids, they can learn and they are smart, they just need to be taught the right way. so chin up and believe that your son will succeed with hard work and focusing on what is important. I have cried buckets of tears and I know where you're coming from xxx

Hi....i have dd 6 ,almost same as yours...borderline asd and hyperactive and naughty.... intellectually fine .
Stil in nappies and very vocal but words only and not proper sentences or conversations....i want to know how well your kid turned out to be?? Kindly respond...it wil help me a lot