ASD - deteriorated after Diagnosis?

[specialmagiclady]

My son (8) was diagnosed with Aspergers just before the summer holidays. Before dx he was quirky and had some times where strange things would upset him, couldn't sit still in class etc. but he - oh I dunno, he wore it well, I suppose. People who knew him quite well were surprised to hear he has been diagnosed, though obviously teachers had been struggling and I had thought he was quite hard to manage at times.

But basically, he coped pretty well most of the time.

This summer has been really tough. Not a day has gone by when he hasn't had some kind of meltdown or episode. He lost it at his childcare setting, so I arranged care at home, while I worked (very PT) but he hasn't been coping well with that.

Just wondering if, in a sense, having a Dx has given him permission to "be" more autistic. Did anyone find this? Or could it be that - like us - he's still reeling from something that, although totally expected, is still a bombshell?

Or is it that now that I am seeing behaviours as "autistic" I am not coping well with them and instead of thinking "that's my child I know what to do", I'm thinking "oh no here comes the autism..." and panicking?

It's got to the stage where I feel that I can't really leave him with anyone other than a professional - that playdates aren't going to work out And every social situation is fraught with anxiety because something's going to happen.

Anyone else with any experience with this?

Ds turns 8 soon, and his definitely deteriorated this last year. Also this holiday has been hard, he clearly likes school, the set routine, knowing what he is going to learn.

He use to be social and know what to say, now he just appears rude and hyper esp when shopping and always talks to staff in some bizarre manner, which makes no sense. I am giving up with playdates at the mom, even though he wants them as he just ignores them or ends up in tears as they do not do what he wants or playing with his things! He seems almost lost alot of the time

He was great a 4-6/7, progressed loads with the intervention, but i feel we have gone back hugely, bar his ability at computer games.

Agree, probably an age thing. My two were quirky but no major problems until year 4 then all sorts of problems over the last two years. I think ds2 was upset by the diagnosis as it points him out yet again as being different from his peers. ds1 much more accepting. Having said that we do put a lot of the behaviours down to being 'autistic' when I am sure some is just being a stroppy, ten-year old.

Feel like that's not the answer I wanted! Oh well... battens down hatches gets in wine

Had a very strange experience reading your post specialmagic. I thought for a second I'd written it and forgotten!! I have been pondering all these same issues recently as almost everything is the same for us too, and I had been thinking of asking others if they'd had a similar experience. DS was diagnosed with AS 8 months ago when he was 8 (now just turned 9) and I'm really troubled by how much worse things are compared to, say, last summer. We've discussed his dx with him, and the senco at his school has done sessions with him about what autism is etc. But things have got steadily worse and worse over recent months. School refusal which we'd never experienced before was a big issue before the summer break. His childcare over the summer collapsed entirely, he just refused to go. His sensory issues are HUGE now whereas they weren't before. I really do believe it has to do with how much all this is for him to take in. Or maybe I hope so... I do get told repeatedly by so many people that challenging behaviour, sensory issues, etc etc, can vary and increase as a result of anxiety levels. I feel it kind of stands to reason that, despite how positive we've all been about his dx, it has caused anxiety and we're witnessing the fallout from that. I really want to create a relaxed, supportive environment for him but am failing miserably at the moment! (I almost matched his meltdown today ). But I too would love to hear from others about their experiences. I'm fascinated by what differences there are, if any, in the way a dx might affect a child by virtue of what age they are when diagnosed. And I mean this in terms of how they process it, and deal with it. I know there are many many variables, in particular probably how parents cope with it all and well supported they are. I just feel v v sad that DS seems so much more troubled, anxious and rigid than before.

Thanks cardboardcactus - that's exactly what I wonder. That said, a woman I know IRL who has an ASD DS says it all kicked off when her son was in Y4 and he only got his DX at the end of the year. So maybe it's developmental/hormonal too... Sigh.

dd2 was recently assessed as for ASD and found to be impaired significantly across the triad, not bad enough for a dx: 'mildly autistic', or something (not Autistic Traits, I totally despite that term! ).

Her behaviour has recently deteriorated and the meltdowns are happening more often in public, the screeching and screaming is louder and scarier and more extreme. I feel dd2's self awareness is growing but manifesting in a negative way. (Disclaimer: in reality I have no idea what's going on with her really). I am beginning to get a bit scared about what happens if it gets even worse.

dd2 has just started Y4, is 9 (OMG she is actually gonna be nine, I think some parts of her brain are still four!) in March.

What you wrote handywoman, about your dd's self awareness growing but manifesting in a negative way, is v interesting. I worry about that a lot with ds. I don't know how to turn it around. I think I just feel so stressed, tired and worried about everything I'm not great at being positive, much as I try.
Btw I love your disclaimer - feel I should add it to every bloody thing I ever write about DS!

Feeling better - as ever thank you Mumsnet! And particular thanks for the book recommendations x

I think what Polter says is true, but I do also feel that the diagnosis, and all the changes that that has brought, have had an impact on DS. The difference between this summer and last are so marked that it's hard to put it down just to those other factors. Your post prompted me to have an Internet search looking for anything at all on the impact on a child of dealing with/learning about their diagnosis, but I couldn't find anything at all! Tons about the impact of the diagnosis on the mental health of the parents but I couldn't find anything about how children deal with it. Or maybe I'm not searching properly, I am a bit tired...

I don't think it is to do with the diagnosis, I would say that there are a few things going on.

I found DS (HFA ASD) really trying at this stage as I would look at his peers and think "FGS why can't you be like them???" because at 8/9 they are really starting to grow up and NT children have less noticeable tantrums, whereas DC with ASD have anxiety related meltdowns as they struggle to deal with day to day stuff that they can't always articulate.

Alongside this, they are becoming pre-pubertal so are slightly more challenging anyway - hormones, growth spurts, pushing the boundaries - I see this very much in NT DD who is 9, but also remember it in DS.

Also, I think having a diagnosis does make you more aware of behaviours as they are happening, and beforehand, so whereas previously you would have gone to a party / play dates blissfully unaware of what could go wrong, now you are aware that it may be fraught with stress and anxiety.

How old is your DS now, superior, and did things get calmer? (looking for glimmer of hope!)

Nearly 15, and yes much much better - a combination of:

us learning how to help him;

him understanding more why he felt the way he did, getting better at being able to articulate this to us instead of lashing out and us coming up with strategies together that he could use;

learning what his triggers were and being able to pre-empt / avoid them to minimise anxiety;

accepting that he was the way he was instead of trying to steer him into "fitting in" with the other DCs - eg we would previously have been trying to get him to join in at soft play / football hoping he would enjoy himself if he gave it a try, whereas he would much rather spend the afternoon in PC World;

moving away from a small village school with affluent intake that had little SN experience and didn't really want him there dragging the SATS levels down, to a school with a much more diverse intake and a fantastic SEN team;

finding him friends who were like him - chess club / IT club etc - mainly geeky socially awkward boys who expected very little in the way of interaction other than to discuss the main topic of fascination.

That said he is 15 and a bundle of raging hormones so it's not all plain sailing!!!

That's encouraging, superior !

Really encouraging though I am still feeling daunted by how "on it" I'm going to have to be!

DS1 was not diagnosed until he was nearly 12. With hindsight the signs had been there since birth I just attempted to understand them through a psychological lens rather than a neurodevelopmental one.

As it is developmental it becomes far more obvious in KS2 as academic and social expectations increase. Teachers assume 'normal' development because this is what happens with NT DC. Stress is exacerbated and some DC develop self-punitive reasoning in trying to understand their difference. Stress exacerbates sensitivity, including emotional sensitivity and behaviour is increasingly problematic.

To put a different slant on the topic, since we have come to the conclusion that my daughter (9) is probably on the spectrum she has been much happier. Before she was very moody, stubborn and unco-operative. Not saying she doesn't have those moments now, of course she does, but generally she is a nicer girl to know! Other people also noticed how much happier she was. I believe it was a weight lifted off her shoulders to discover why she was so different to everyone else and now she doesn't have to try to 'conform', taking the pressure off.
I have noticed more 'symptoms' though, over the summer holidays than she had before, perhaps she's 'allowing' herself to show them now. For example sat in Tesco with her fingers in her ears because she couldn't cope with all the noise etc, poor thing.
Happily though, we have an appointment next monday with the GP for a referral to get a diagnosis, daughter is really excited about this!
I said to her that they may say she hasn't got Aspergers, she said if they say that I'll tell them they're wrong!
We read 'Can I tell You About Aspergers?' and it seemed to just set her free, it was like 'Now I get it!'

DS, with Aspergers was a horror when he was 8. Autism support told me that a hormone trigger goes off in boys around 7/8/9. This is the body's way of beginning to prepare for puberty. I was told it was very common for them to be quite unmanageable around the time the hormone spikes and for them to calm once their body becomes used to the hormone changes. DS calmed down a lot the following year, as he is 12 this month I am waiting for the next trigger to hit!!

I wondered the same with my Dd3 once I had told her about her dx, I think that she stopped holding in some of her difficulties and felt at ease with herself being different.

Since I told her last summer that she has Asd she has had less meltdowns but she does behave differently when we are out and about now. I think lots of her meltdowns were due to her holding it together and saving up stress until she got home but now she allows herself to let it out.

I hope your ds settles down and that he can find a balance between holding it together and letting it out.

Good luck