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!

We are a few months down the road and experienced exactly what you describe for all the same reasons. That overwhelming sense of grief certainly gets better and you'll soon get through the day without breaking down in tears every five minutes. I'd love to hear what people say that are further down the line in terms of the general sadness I can't shake off.

It's probably all of those things. I think as long as your child doesn't have a dx, you have a little kernel of hope that they're going through a phase and will grow out of it. Once you get the dx, that door slams in your face.

It will get better and actually was a real relief in the end. But I didn't get the euphoria/relief I'd expected immediately.

Hi

I'm also stuck in the bed today - worrying about DS as usual. He also was recently diagnosed with HFA.

I was so upset when I was told even though I'd kind of guessed what it was. Even though they said it was mild I couldn't hold back my tears.

He's playing downstairs with his little brother now and I feel guilty I'm not bringing him out somewhere but sometimes I just get fed up and lose motivation.

I was hoping for any diagnosis but autism as it just feels a bit hopeless when there's no cure. It just sounds serious

I find it very hard to accept. People say autism is just a label - but it's not just a label if your child meets the criteria for that label.

After his diagnoses it felt so overwhelming - he was from now on a person with autism . I feel uncomfortable with saying he has autism - I prefer just to think he has 'some issues' or he has poor social skills. Not sure if I'll ever accept it.

I'm always thinking 'why us!' 'Why DS'. When I see a parent going by who's roaring and cursing at their child I think - how did they get a child who is 'normal'? I thought I did everything right as a parent but this happened

I know I should get up soon - I feel like a bad parent lying in bed feeling sorry for myself!

SIL has a DS who is a teenager - he also has autism but a bit more severe than my DS. He doesn't like leaving the house and gets in to rages and runs away. However SIL copes much better than me. The more serious incidents with her DS annoy her a bit but don't really seem to knock her back. She always in a good mood. I'm not sure if this is because of her own personality or is it just because she's a few years down the line and has got used to it. Whereas any small incident with my DS really upsets me and I can't shake the sadness for a while.

I hate the fact that there is a constant reminder of it. So sometimes I'm feeling really happy and then we meet someone and DS forgets to say hello or he acts a bit odd - and then I'm reminded again about the autism.

My DD was only diagnosed 2 months ago, the relief was enormous and this huge weight lifted off my shoulders. I was making myself ill obsessing over her behaviours and writing down every little thing she did and why she may have done it. Since she got her diagnosis I haven't done any of that and have just got on with it and started to understand her a lot more.

I have moments where I feel bereft and will have a little cry to myself, then I give myself a talking to and carry on.

Sorry I sound so depressing!

Thank you so much everyone... I did get up eventually (in fact after I wrote the post). I think as Lynda says, it's everything. I think I was just expecting the relief straight away after the battle it has been to get him assessed... that suddenly I've been hit with this wall of different emotions I wasn't expecting. Probably not helped in itself by the fact that DS isn't handling the diagnosis brilliantly (they told him directly, in a wonderful way), but he's gone angry and very volatile again (which I'm used to in term time, but we've had 5 lovely relaxed weeks...), as well as even more weird noises and movements, and DH has decided his way to cope is to keep telling DS off (which has completely the wrong effect). I'm sure it'll shake down to a new normal soon.

I'm glad I'm not alone though in how I feel. I think because it's so at odds with what I thought I'd feel it's caught me by surprise. And SplashMarkes - I get it, it's crap, it's final, but my friend told me it's also a gift... which I guess it kind of is: DS's ability to be focused, to achieve what he can, has a flip side. And he's got us. I think he'll be ok. And I suspect the same applies for you.

A smack in the face hurts no less and feels no less unfair just because you were expecting it.

For me the worst bit was knowing for certain that I wasn't a crap parent. How I would have preferred that to have been the case, because you see, I could fix that!

During the diagnosis process I was always clinging onto that hope, though I knew it to not be true.

I went to an ASD support group and said in hushed grief-stricken tones 'my son has just got a diagnosis of autism' to which the response of the autistic person I had just told said in a horrified voice 'It isn't the worst thing you know'.

But it was.

But he was also right. It isn't.

Learning about it and advocating for your child is hard work, but it takes the rawness out of it, and somehow you figure out how to have a happy family life with hope.

We dont have a diagnoses however its great to hear that other people have been through and think the same as i have thought many times, many times i have thought perhaps my son is normal, perhaps its my shite parenting, or mabe im making a mountain out of a molehill,glad to hear its not just me lol

But please remember he is the same child. I went through the same feelings myself when my child was diagnosed.

queenofstarlight - so well put. It is the finality of it - I've actually had someone say to me this year it was crap parenting, which stung like hell. But I could have fixed that. This I can't fix. I'm trying to take comfort from the paed on Thurs who said it's testimony to the parenting he has had that he didn't struggle more sooner, and that he's a lucky boy to have parents who are going to do everything we can to make things easier for him. I cried! DS just turned to me and said "why are you crying Mummy? It's true, you are the best mum for me". And maybe it is partly knowing that the fight of the last year is nothing compared to the advocate I know I will need to be for him in the future. The older he gets, the more his quirks stand out...

Louise43210 - yes I am reminding myself he is the same child. Nothing has changed on that score. He's still this amazing, bright, funny boy who melts my heart. I couldn't be prouder of him for all he is and has achieved. The speech & language therapist said she could see how hard he works at sussing out what's expected of him and it must be exhausting, and I know that's true - he tries so so hard, and normally it pays off, but it means he comes home from school exhausted and fit to explode. That of course means school don't 'see' it.

shazzarooney - we thought for years is he? isn't he? isn't he just bright and quirky? strong willed? shy? or because we're going 'wrong' somewhere? it took years of this before finally being convinced (by the school SENCO who's now left, and an audiologist after a nightmare hearing test) to investigate. I do strongly believe though that for his future it's best to know.

Dd has just been diagnosed. It wasn't a shock as they had said they thought it very likely but up until two weeks ago I thought they were talking nonsense.
I can see why it had come but I am still trying to sort out what I think and feel about it.
Dd is puzzled but a bit passive so I don't know what she really thinks.

When ds was diagnosed I was relieved and felt vindicated. Even though this diagnosis for dd has taken off some heavy pressure about our (especially my) parentlng, I don't feel relieved at all. I don't want to be vindicated at dd's expense.

My ds was diagnosed with HfA a few months ago. I 'knew' from when he was about 2yo. I told the clinical psych I felt vindicated when given the dx.

The past few weeks I've really struggled with it, I guess it's the knowing it's nothing I can do to change the situation (like star said). Also the fact he's starting secondary.

I agree though there are worse things and it's the case of being kind to yourself, accepting as a parent you won't always get it right but always striving for the small steps. And celebrate those steps.

I also think knowledge is power so would recommend some of the reading material linked to a lot on these boards and taking what's relevant from it.

I hate the fact that there is a constant reminder of it. So sometimes I'm feeling really happy and then we meet someone and DS forgets to say hello or he acts a bit odd - and then I'm reminded again about the autism....

Oh my god I cannot relate to this comment more it's so so so true and sad at the same time ....

pukkapine - do you really think their quirks stand out more the older they get? I thought things improve as they get older??

Xena - I don't know. It's just my take on things... take the forgetting to say hello/goodbye thing... (or in DS case showing complete aversion to it)... in younger children that is more socially acceptable and not perceived as rude. Or when DS was a little toddler, he was surrounded by little toddlers who did slightly random things... it didn't seem as odd that he collected milk cartons (for example) or stimmed using feathers, or it was endearing when he monotoned hummed because he was happy. Now he doesn't collect milk cartons but he's not interested in any of the things his peers are and doesn't see why he should be from a social point of view. He looks in bewilderment as they fib their way out of trouble. He's lost at least one friend because he simply doesn't understand the nuances of their social language. He hides in his room to stim (which he's done since age 1) because he thinks people will laugh at him or call him weird. A toddler cries because the ketchup touches the mash, there will be several other toddlers having a strop about something at a meal time... it doesn't stand out... your huge 9 year old very loudly breaks down in to screaming meltdown because his ketchup touched the mash and all of a sudden you have a whole restaurant staring and judging your parenting. Some things do improve... my ability to predict, divert and assuage. But the social nuances get harder for him to predict and navigate. Appearing 'normal' takes increasing amounts of energy on his part, meaning he comes home from school a wound up nightmare fit to explode at me or his sisters or himself. And that's harder to handle because he's 9, he's big, he's powerful and capable of really hurting someone - which he will then feel utter guilt and shame for when he's calmed down. So I don't really know - but certainly I think for him it's harder, he's certainly more aware and that's distressing as a parent to watch.

Hi pukkapine yes that all really makes sense. My son is four and I do actually remember the paediatrician saying things about issues not seeming too big when they are young as they are young. But if these issues persist that is when they will stand out. I hope things improve in others areas though. God be with us on this journey and give us the strength to put in the extra effort our kids need

I am actually bawling reading these posts. DS is a way off being diagnosed but I am where you were before it became official. I know but there is still hope. I am just so sad and I feel so alone because frankly DH has been fucking useless another whole thread. It actually feels surprisingly relieving to know I am not going mad and this is normal if that makes sense but I am still so, so sad.

I felt the exactly the same for all of the reasons you mention. I remember DD just turned 5 laughing and babbling to herself as the team told us her assessment was consistent with a diagnosis of ASD. I knew, I was expecting it but still a part of me want "them" to tell me I was wrong.

I cried and felt bitter and hated "normal" families for a while but now things are so much brighter. The wondering and worrying was the worst stage for me. Now we have support and the school on side. I see my child improving rapidly as a result of the additional support.

Allow yourself to feel this way now. It's natural but it will get easier.

Xena I think things vary from age to age... what seems harder at one age seems simpler later on. And we're all learning. And we've been given the exact child we were meant to have. I often come back to a quotation I once read: "Motherhood is about raising and celebrating the child you have, not the child you thought you'd have. It's about understanding he is exactly the person he is supposed to be. And, if you're lucky, he might be the teacher who turns you in to the person you're supposed to be."

anothernumberone - I'm sorry your DH has been useless... if it's any consolation we had a horrific patch where DH shouted at DS "stop being weird"... and frequently seems to be set out to, admittedly unintentionally, antagonise poor DS. Ironically, I suspect DH is the genetic 'reason' DS has HFA... he's not as extreme, but definitely traits... On the other hand, for years we'd play a tag team when one of us thought DS was 'fine just quirky' whilst the other thought 'something more is going on'... then it'd flip... then, about 18 months ago both of us were in the 'there's more to this' camp together, and that's when our outlook as a couple regarding DS began to shift and ultimately put us on the path to diagnosis.

Glittery thank you for your kind words... I found myself today, on a train, almost seething with bitterness at 'normal' families. It shocked me, I've never felt like that before. But all of a sudden it was like someone put a spotlight on us. It's good to remember the whole purpose of going down the diagnosis route was to get DS additional support, and hopefully in time we'll see that.

how you feel is how youfeel. There is no right or wrong way to feel and it will depend on the path to diagnosis really.

I had a similar reaction to polter... vindicated... (I knew that he was from very young so perhaps that is why)

I do get annoyed at NT families who do not get that life can be a little tricky at times with autism. and ds is still little ebnough to get away with a meltdown. but there is always that parent on the playground who says you ought to just do...

Thank you - I do also feel vindicated. I've had a year of school telling me "there's no issue" and that it's parenting (despite the fact it was their previous SENCO who raised it in the first place, and referred him). But it's 'cold' relief if that makes sense. I wish in many ways I had been proven wrong. But there is a part of me that is looking forward to the email to school (still being drafted) that basically says: see, told you so... now what you gonna do about it?? I also am starting to feel a large element of "wow, you've got to 9 without any help, you're doing great, you're super-mum" and seeing just how far we've come and 'managed' it. But the flip side of that is "no wonder I'm so to the bones exhausted by parenting, and spent hour upon hour at times wondering what I was doing wrong".

I've just been on pinterest downloading some fantastic resources that I think will help DS. Building up my fighting spirit once more to help him grow. But conversely lying in bed drained of energy to get up and actually engage in the day to day. Today we're off to friends where it's all 'unknown' and lots of younger kids, a situation we know DS struggles with, and wondering how to manage his behaviour versus how much we'll be judged for letting him take his electronics along: electronics = easy day for us and him, but electronics = being judged for lazy parenting. Woohoo.

ahh shame you can not write fuck you to school in an email really

I could have written some of these posts... Although DS (3) doesn't have a diagnosis various health professionals have agreed he needs assessment so we are waiting for that but there is no doubt.

My 'moment' wasn't a formal diagnosis but my own certainty, which hit me hard after a discussion with his nursery, and then reinforced by the fact that various professionals have taken me completely seriously, and no one hasnt. I cried for about a month.

I have so many feelings about it but can completely relate to shock, even though I have been concerned about him for some time. I feel devastated for him, knowing he will find life more difficult, and for us, as we have lost the family life we thought we would have. I feel guilty for how upset I have been, as if I am somehow 'rejecting' him by wishing he wasn't autistic when it is who he is. And I love him so much it hurts. I feel guilty about working ft and wish I didn't but I am the main earner.... I feel conflicted about having another child, with the risks and the time I think DS needs, but I am 40 and don't have time to think about it. So much to process, I don't know where to begin.

I guess my feelings have begun to settle because k have stopped crying constantly and am now trying to get on with it but I have so much to learn. It is a devastating experience, I feel as though I am going through a bereavement.

Not much cheer for others on this thread but it is early days for us, it will get better and although surrounded by NT families who take their good fortune for granted, you are not alone.

Just wanted to agree with all the above, I've been fighting to get dd diagnosed for 2 years. Been told it's just anxiety, she's fine, I need to be stricter etc etc. school think I am neurotic, and she's also been discounted by psychologists and peadiatrictions at the local CDC, things came to a head in March when she started self harming and we got an instant refereal to CAHMs. We saw a family therapist who looked over the old psychs notes and meet with dd (she's just turned 7), who instantly said there is something neurodevelopmentla wrong, probably ASD, spd. I expect she'll come out with a HFA, SPD but I also think PDA and I'm not sure who our CDC will view this,

Since the therapist said this, I've felt all the emotions above, as it is the first time that a health professional has agreed. She wrote as much in a letter to school, so that they'd listen to me more. the senco at school seemed to me to be shitting himself a little dd was separated from all her friends this year in class, so they let me pick the kids that she was with!

Anyway, I am now just petrified that dd will 'fail' the ADOS she has next week. Overall I don't really feel vindicated, I did, but it was pretty hollow . I feel pretty angry that I was always ignored - that no one took the time to say, "why do you think she is autistic?". I have composed many a poignant speech in my head to various health professionals! I lost my first child 10 years ago and am familiar with how grief works, so I guess we will just adjust our lives around this but hopefully with more support. Like with my daughter, I'm looking for what I've done wrong, even though I know it's nothing. It's just a type of grief, it needs to run its course and over time it shrinks (but never goes) and you just adjust your life around it.