How did you feel the day you got the diagnosis?

[sleepyhorse]

Ds doesn't have one yet but judging by the reports from SALT and the pediatrician it's looking like he is going to get one. He is 3.5 yrs old and his main problems being he has significant language and speech delay, poor eye contact and short attention span. He will look at other kids with interest but doesn't always join in - I have always put this down to his lack of speech holding him back. However the most recent report from the ped following her visit to his nursery suggests that he has made some progress since she last saw him but also mentioned a possible social communication disorder. This is another word for ASD isn't it? If I'm honest I feel terrified of getting the diagnosis but not sure why as ds is still going to be the same little monkey, nothing is going to change with him. And let's face it I have known for long enough that something is wrong. He prob has a speech disorder too. Anyway just wondering how you felt when you got the diagnosis? Did it change anything for you?

Felt like I had been hit by a train both times AND I knew it was coming!
There was always a little part of me that hoped I was wrong. Took a good few months to deal with and even now have bad days.

Right now I think I will hug the person that actually gives my son a dx. Because then my family can move on and we can help him properly rather than being blind and only helping the surface.

The other part of me will break down if I am honest as it is like I have a child but he is missing in limbo and I need that finality to stop me hoping it is a dream. THEN move on.

Very wobbly, even though I knew deep down already. DS (7) was diagnosed with AS in Sept, I had started to notice slight developmental delays at about 18m and he has been under various professionals ever since, so not exactly a bolt from the blue. Relieved and very wobbly at the same time. Relieved because I had thought it might not be clear cut and we would have been left wondering, or a woolly diagnosis of some sort. Wobbly because it is still a shock to have it confirmed. I had left my younger Dd with my best friend while I took Ds for the assessment, I went back to pick her up at 12.30 and SO didn't want to be alone with the DCs that day in case I burst into tears, luckily it was the school holidays and friend was free for us to all stay for the rest of the day.

Also felt very emotional the day I explained it to DS, all he wanted to know was whether Mummy still loved him, which melted my heart. You are right, it doesn't change them one jot, it has changed me though, I feel closer than ever to him.

I remember the journey home and non of us said a word to each other.I made the kids tea,got them to bed and just cried all night till i run out of tears.Got up the next morning and felt physically sick walking into school as i knew his headteacher was going to be all kind and set me off crying again.But each day got better.
We all knew autism was going to be DX that day but i think untill its actually said you always think its just a delay and he will catch up.For me it just comfirmed it was permanent and it hurt.

relieved

The diagnosis meant that social services would discharge us, as they had a reason for my son's behaviour, so no longer suspected me of doing anything wrong.
Diagnosed with Autism aged 4

I have to say your pead was very lovely and explained that dd1 was def high functioning even though it was def autism and not asbergers but said she knew she would be ok because she's so bright. She seemed more concerned about dh
Dd2 was seen at 2 and she have verbal nod but fully dx'ed at 3. She said yes autism and yes delayed but could see she was a huge personality and that she would do well.
Before dx I would go back and forth and question whether or not it was right. After dx I don't question it at all, maybe because it's even clearer now

We're not there yet. Though I imagine if we get there it will be a double-edged sword of relief and dismay. I have loads of friends who've gone through the process, some receive diagnosis with minimal assessments (more severe cases) and yet some (like me) have fought for diagnosis. In my experience the ones who receive the more timely diagnosis are in more shock and go through a very tough time initially, whereas the ones who've had to fight are just so flamin' relieved it is initially a huge weight off the shoulder, but then hits them later. They (like me) got so caught up in battle after battle it's almost like you have to be defensive all the time, then when you get diagnosis you can tell all those estranged family and friends where to go!
Sadly, we're not there yet. We got a diagnosis of "there's something but I don't know what it's called!" Now on for a second opinion.

Thanks for all your messages. Yes I can imagine that it must be a combination of feelings, sadness but also relief. I often think the not knowing is probably the hardest. If I'm on honest I do have days where I want it confirmed but then secretly I think that whilst they take their time assessing him, it gives me a glimmer of hope that he could just be delayed.

Mamma - can't believe social services got involved, thinking you were a bad mother. That must have been awful for you. I hope you told them where to stick it once you got the diagnosis.

Xxx

We went to a coffee shop and just gazedinto space. Even when you know it is coming it is still a terrible shock. Part of you still thinks you might have got it wrong, and suddenly you know you haven't.
On the other hand once you have the diagnosis you can use it to work in your DCs benefit.

My DD (2.5) got the diagnosis last week. I felt relieved, because I knew she would now 'qualify' for the continued speech/lang etc she will need. But I felt hugely helped in coping by having read MN for the last 8 months, gathering info and reading what other people had felt.

So I knew that most people feel shocked and upset, even if they are expecting it. I prepared myself that I would feel strange about it. That really helped me to cope and to feel not alone. I decided to view the diagnosis as a sort of 'shorthand description' of my DDs problems/issues, so that others could quickly understand her.

Of course I still feel very upset if I look to the future, as I don't know how she will progress. But for now, especially seeing how long many MNs have had to wait for diagnosis, I felt grateful (for the assessment period not dragging out for years in limbo) and relieved that we could now look forward, and to stop wondering if I was 'seeing things which weren't there' or 'just doing something wrong which made her so difficult to manage'.

She is still lovely (difficult, but very lovely at times), but now I have a 'tool' to try and get the best for her as she approaches pre-school etc.

Sorry, very long. First time I've written about it. Still assimilating it all. Thank you all the experienced MNs whose experiences and wisdom I've read.

jandymac our posts crossed over - you've summarised what I felt too, but so much better & quicker!

I did feel quite stunned straight afterwards, and started to shake for a couple of hours after that. Next day felt really tired and drained.

Shocked, angry(why us), depressed and in denial.. That was 4 weeks ago when the A word was mentioned for the first time. Consultant didn't diagnose it there and then so we went privately and she suggested a working dx of ASD on the same day when ds2 was born....I found out about ds2 on the way back from the appointment.. Talk about an emotional roller coaster... Since then it has mostly been sadness....] We are still trying to digest it even now..... There are good days and there are not so good days... It is the unknown which scares us the most...... Not just for ds1, but now ds2 as well.,

I agree that this board had been a lifeline, would have absolutely no idea where to turn to and would have wasted precious time waiting for NHS to confirm diagnosis..

with ds2 (hfa/adhd) relieved that I wasn't going mad but then after about 3 weeks very sad. Sometimes I still feel that my heart is being squeezed but it is generally when I am feeling v tired or under a lot of pressure and not as resilient.

dd3 was dx with adhd about a month ago and I just felt pure relief that I wasn't being neurotic. Now we can move forward.

A mixed back really x

With ds I knew it was coming his paed had said as much at his first appointment at two and a half. Every professional mentioned his autism from the off but I still felt shocked when it was official. I had an awful ache in my chest and I cried and I felt sorry for the paed because I think he thought I hadn't taken in what he'd been saying all along whereas I had but I still felt shocked.

With dd I barely paused, again I knew it was coming but this time I felt prepared.I knew what needed doing and I knew how to get what I needed so it was fine (or so I thought) Three years later I crashed spectacularly when an awful teacher at school made me realise that whatever I had done and was still doing it could be jeopardised by the actions of a twat.

Nowadays I'm fine although the enormity of it hits me now and again and I wallow for a day or two.

Hi - so glad to read these other messages. Me, I felt like I'd been hit by a bus even though we'd been in the system for 6 years at that point! I remember thinking that I now understood the cliches - I did feel the breath had been knocked out of me. It was like hearing it for the first time.

I was on my own with ds in the room and my only immediate thought was that I had to deal with it positively as he would remember my reaction. So I acted my socks off being calm and casual.

I couldn't talk about it though; I had to email close friends to tell them. It's taken several months for it to settle - it's a slow process. What you know logically about how it will help your ds/dd doesn't fit how you feel about it emotionally, does it?!

I requested an assessment of DS when he was 3, finally got his official DX aged 6 (we knew though before this).

It was a huge blow the day I got the call after the panel had diagnosed him. I had pushed and fought for his DX and I think that fight had kept me going, when it was over I broke down. Couldn't speak to his dad on the phone (we're not together) and so I text him and then turned my phone off, which was extremely shit of me. I just couldn't handle the news and found it devastating. I found it like grieving, and I think I will carry on grieving for a long time TBH.

I know some parents say they wouldn't change their dcs who are on the spectrum but I would. He finds things hard and so do I, and I worry so so much about the future.

Obv I wanted him diagnosed so I could use it to get his needs recognised, but I'd much rather I didn't have to do any of it.

I was told the week of DS's 3rd birthday and there was a huge sense of overwhelming relief. I knew something was wrong, he has autism but it was a battle to get to the diagnosis.
Looking back that relief did not last long as I put 3 stone on that year and was depressed for about 5 years.
I think I thought knowing what was wrong would help but he still has autism 9 years later and we are still faced with the same problems

sleepy, paed says DD has a social communication disorder but we will have the ADOS to establish if it is ASD.
I take ASD is a form of a social communication disorder but not every social communication disorder is ASD. have to admit thought that I don't really know how a social communication disorder differs from ASD

chocjunkie- to be diagnostically valid ASD has to fulfil specific criteria roughly relating to triad: if it does not do that then it's an SCD nto ASD (inncluding PDD-NOS)

We've had two formal diagnoses now: on ythose days i felt the same things over the space of about three hours starting with disclosure:

relief that we finally knew

hyperactivity and a sense of confusion

utter devastation and a physical pain

Both times were within a quite close time frame really (with ds3 we had several disclosures as theyw ould dx then backtrack and then dx again- and I felt the same every time). It is only now years on that I an realise how thoroughly floored I was and that I went through a form of PTSD.

School says ds2 has some stuff going on but that they cannot help due to cuts (Head suspects ADD, SENCO borderline dyspraxia); ds4 is being watched as he shows signs of AS. We're not clear yet.

DS1 was first dx at 3 ish with dyspraxia and possible aspergers. It didn't surprise me as we knew from before day 1 there were issues. Everybody used to say what a laid back baby - you're so lucky. Didn't quite get the same you're so lucky comments when he wasn't walking - sitting up and making his 'milestones'.
After dx we got no support - had to fight for every appointment and every bit of help. First school failed him - but all through this i never believed that in the grand scheme of things he was that bad.
This summer we had a very in depth assessment and tbh i was quite staggered at how poor his skills were. I genuinely didn't realise how difficult he must find everything to achieve what he achieves. So these results actually hit me harder than the original dx. part shock at how bad - part guilt that i hadn't realised, but also admiration for how well he manages life - so a mixed bag here too.

That's interesting auntevil, I used to think that DS certainly had some ASD traits but wasn't that bad as he managed pretty well, didn't show extreme behaviours, did most things eventually, albeit late. I also didn't think he had the rigid need for routine. I thought he might be borderline, his first appt with the paed left me with the same impression, so I was knocked for six when at the second she told me she wanted to do the ADOS assessment, and then afterwards told me that although she still had to score it all she was in no doubt that he had HFA or Aspergers. In fact he was nowhere near borderline in the ADOS, he was well over the line. I now see that a lot of the time he wasn't growing out of things but learning to cope with them and that he does actually have the routine thing but it manifests itself differently to how I expected it to be. He was assessed (but not formally diagnosed) by various people (SALT, Ed. Psych) as having Social Communication Disorder for several years first, our SENCO said that that is a bit of a catch-all for when it is too early to diagnose a specific SN. Interestingly, a lot of adults that he has contact with have no idea that he has AS (haven't told many people yet) and those that do know tend to say that they would never have guessed, as many of his behaviours can still be typical of boys his age. Those that have a lot of experience working with children tend to notice, but not my friends, or his friends parents for instance. I think it will become more obvious as he gets older though. Would I change him? I just want him to be the same as other children to be honest. But then what is normal anyway? I love him to bits, but it makes me want to cry thinking how much harder his life is likely to be because of it.