DS just been diagnosed... it's not a shock, why am I so upset??

[pukkapine]

DS (9), was diagnosed with Auditory Processing Disorder earlier this year (which I hadn't heard about before he was diagnosed), and then on Thursday was diagnosed with High Functioning Autism. It's not a shock. We've suspected since he was tiny. But the last year has been a huge battle of NHS/school etc. It's not a surprise to us but I just feel so so upset.

I don't know if it's the 'relief' that the fight of 'not knowing' and school not seeing an issue being over, and the 'fighting spirit' is what kept me going. Or that I have no family to tell and to care (although to be fair my friends have been great) and feeling a big hole because of that. Or that it's woe is me because now I have a reason why parenting him can be an almighty challenge. Or that all the while we had no diagnosis there was a glimmer of hope that I could be wrong, and that he was 'normal'. Or worry for him and his future, and what it means for him. Or simply, that he's my baby and he's got a label of something 'different', and different can be hard. I'm so down about it I can't seem to even get any motivation to get out of bed this morning (to be fair there is more going on, but it's a big part).

Tell me it gets better and this is just a passing little phase of adjustment!

BlackeyedSusan - my email is still in the draft stage because I can't write it in a way that doesn't basically sound like "fuck you" covered in glitter ;)

BirdingWidow - I am so sorry you've struggled so much too. I'm really so very low about it and now berating myself for being so miz... so it's helpful to know I'm not alone, although of course I wouldn't wish this on anyone. I feel for you not knowing what to do regarding more kids - although DS has been hard work and quirky since birth, I already had his sisters (who are twins) when things became more and more apparent. Therefore we never had to make that decision - it must be hard. But I think go for it. Although DS struggles sometimes more because of his sisters, he learnt so much from them to: he learnt a degree of play, he learns unpredictability and how to cope with it, he's learning shades of grey, he's even learnt to hug from them.

Certainly, it wasn't until DS was at school that DH and I were singing from the same hymn sheet, and we were still faced with him just being seen as 'quirky', we'd already had his sisters by then. I think because he is so bright, he's nicely ticked all the school's academic achievement boxes for so long, that looking beyond that to what is really going on hasn't happened. Also, DS holds things together remarkably outside the home - as they pointed out at his assessment - so I've been faced with years of thinking it's me, my parenting, he only melts down for me, he CAN hold it together for others... but no matter how much I'd tell school "he had a meltdown last night due to XYZ at school..." or "he's really anxious about this.." or "he doesn't understand why he got in to trouble for this..." I even showed them photos of him taken at a school event where he was rocking, covering his head and ears because he couldn't cope... but because he didn't demonstrate it to them directly, or he dealt with it quietly and they didn't notice, they simply said "he's fine" and more than once implied it was me, lack of structure at home, inability to stand my ground. His class teacher last year labelled him as naughty (because of transition times) and this year just gone who was more structured said the reason I got the bad behaviour at home was because I let him tantrum like a 2 year old and he'd never learnt he wouldn't get his way. It's been so so hard.

See why I can't send school an email informing them yet ;)

Anyway, it's clear none of us are alone, and there's a whole myriad of emotions that come in to play. Guess it's time to ride the wave, and remember to be thankful.

Dd was diagnosed with Aspergers at 8, she's going to be 16 in a couple of weeks.

I always knew there was something, but I discounted autism. I'd never heard of Aspergers back then.

As time goes by lots of things become much, much easier. We had a relatively easy ride for a good few years.

However for dd the transition to young adulthood is proving very hard. It throws up a new perspective and we are both facing her diagnosis as though it were new, if that makes sense. It means different things now than to the 8 year old dd.

Birding Widow, not one professional told us there was nothing wrong and for us to skip out of the door back to the NT world. It made me feel despondent and terrified and envious of those on this and similar forums who'd been told not to worry their child is/was "normal" even though it/wasn't the case.

It all gets easier to handle with time but some days force you to confront your child's differences full on and it bloody hurts like hell.

DD 7 getting the piss taken out of her by slightly younger children because of her poor language skills and quoteing in the wrong context Peppa Pig scripts.

imip sorry I didn't see your post earlier - we must have been writing at the same time. I'm so sorry for your loss, that must have been (and no doubt continues to be) so hard. I wouldn't want to compare this situation in any way to the bereavement you've suffered, but yes there are elements of grief. Ironically, I was in floods of tears Friday directly as a result of true-grief because I desperately wanted to pick up the phone to my Gran and tell her about DS (she was more like my mum and died 7 years ago). This whole thing made that grief feel as raw as the day I lost her. It was awful. I hope all goes ok next week, you have been heard, but take along your copies of previous notes just in case they don't have them to hand - the words of another professional should carry a lot of weight.

thornrose it's relieving to hear that you have had easier patches with your DD. I can see why the transition to adulthood is hard. It must be quite an overwhelming time for everyone involved: both you and your DD.

Glittery I think your case shows how isolating the whole thing can be - no case is the same, and as such no matter how much one of us can empathise, we're not going to get it in the same way as walking in someone else's shoes. But maybe part of that is because of how heightened our senses have had to become in order to predict and assuage, constantly, every minute of every flipping hour of every sodding day... I don't presume I'm amazing (far from it) but by heck I know what makes my DS tick in a way I don't with my NT kids... I have to, to help us all... and that deep deep understanding and constant crisis avoidance on a minute scale means that even more so it hurts when 'professionals' make throw away comments that leave you wanting to hit your head on a brick wall... not sure if my rambles are making much sense... long day, have just finished working thanks to DS setting bed time with his sisters off in to hell-zone, so brain not functioning!

In addition to the helpful and wise observations by other posters and by you OP, centuries of disability discrimination through exclusion and low expectations driven largely by fear - have probably had an effect on your response. You are in conflict with this ingrained societal pressure, as a mother who just sees her child first and foremost. A psychologist might call it cognitive dissonance and it does take its toll emotionally so be kind to yourself.

When I went through the diagnosis stage I was given the opportunity to meet a group of disabled adults and they soon put me straight by encouraging me to look ahead for a happy healthy independent future for my child.

Obviously the practical implications are fairly huge but now you have a diagnosis it will be a lot easier.

And don't let him hear too much about it, it will take its toll on him too.

I went mad when I realised DS had autism (he was about 15 months and got diagnosed a few months after that). I mean completely out of my mind, mad with grief. It was the worse time of my life and went on for months. I got sent to a psychiatrist (who was well into his 50s) who told me that I was one of the most very severely depressed people he had ever seen. I honestly just did not want to go on living.

18 months on and I feel... OK, and have done for a while. It has become a new normality I guess and I am generally pretty happy again. I still get jealous of families with NT children and I still ask myself "why us, why DS?", fairly often. I still feel worried when I look too far ahead towards DS starting school, will he have any friends, will he ever have a job, etc. But most of the time, I plod along OK. I read in a book about coming to terms with having a SN child that on average, parents said it took them between 2 and 2 and a half years to fully come to terms with it.

I think it's made me a kinder and more compassionate person too, not to mention an awful lot stronger. I don't think there's much that could shake me now. And, having seen how some close family reacted and how little support or kindness they showed - it's made me realise who our true friends are and who really matters.

Not sure what the purpose of this rambling is other than to say I know how you feel, and it does get easier. One thing I would say is that anti-depressants were (probably quite literally) a life-saver for me. I didn't take them for long but they gave me the ability to get through that really awful patch until I could get my head around it. If you find you are really struggling, please do go to the doctor. All the best.

I can't say a big enough thank you to everyone on this thread - having this thread has helped enormously over the last week. I still am struggling but feeling less alone, and that there are others out there who have been through/are going through the same thing. I'm not a freak for reacting this way

Yesterday we met with our amazing TAF worker, who comes once a week to help DS with his anxiety. She came with us to the assessment. And it was so helpful for both DS and myself. She helped me see his reaction is normal (he's now only talking in the third person - depersonalising it, but by heck it's irritating!). And we're working together to help him adjust. She's offered me loads of reassurance, advice, resources and is going to meet with just me once he's back at school to go through more from my perspective - groups etc that I could go to.

KitchenAppliance - thank you. It's so true, that dissonance. I developed a disability as an adult and it all makes sense.

DimpleHands - thank you for your kindness. I'm sorry you have had such a bad time of it. I have found myself asking the same question "why?" a lot - and then berating myself for not just accepting and loving him 100% as who he is but resenting how 'easy' others have it. I know it's not helped by other, kind of unconnected feelings (I have PTSD), but I'm going to have to do something about this little bud of resentment I can feel. I don't want to be resentful or bitter over my beautiful boy. I also am already on anti-depressants due to the PTSD, and unfortunately depression is no stranger to me. I have worried that this has really sunk me further over the last week, but I think it's just adjustment, and in time will settle down. I certainly feel today less woe is me, and more 'put on your fighting spirit and be there for DS'. I WILL make the most of the last few days of holiday with the kids and not let this overshadow that.

Thanks all, again