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I'm not able to accept the diagnosis

(32 Posts)
jogalong Sun 16-Feb-14 19:47:34

Ds has just been diagnosed with asd and I'm having huge trouble accepting it. Before we had the assessment I was convinced he had autism. Now since we got the diagnosis I'm convinced he doesn't have it. I feel Iv really let him down by answering questions and giving the information to bring about the diagnosis. I'd love to fill out all the forms again because I'm wondering now was I too hard no him.
I know there is some developmental problem with him but maybe it's just something he'll grow out of. But now he's labelled for life
I know I probably sound like I'm cracked. And I probably am. Anyone else feel it very hard to accept the diagnosis. Or how long does it take to accept it?

PolterGoose Sun 16-Feb-14 19:57:20

Message withdrawn at poster's request.

adoptmama Sun 16-Feb-14 20:09:55

Remember they didn't make a diagnosis solely on what your said/wrote, but on other factors too. If you continue to feel it is the wrong diagnosis in 6-12 months then ask for a new assessment. In the meantime I would try to just let yourself absorb the news and see what services can be offered to help your DS.

autumnsmum Sun 16-Feb-14 20:11:25

Jog I've had a mumble on another thread on this very subject . At the end of the day he's still your boy and also a diagnosis enables you to get lots of services . Finally thete is a huge variety in autism

littleballerina Sun 16-Feb-14 20:16:12

DS got his diagnosis the end of last week.

He is still the same quirky child that he was the day before the letter came, the only difference is that he may get help in understanding the world.

Hanginginthere123 Sun 16-Feb-14 20:16:23

Yes, I understand how you feel.

Has taken me a year to start to accept it, but takes very little to knock me off balance into a tailspin again
I think the key is that - the way our education system is - a diagnosis unlocks the right educational support which can otherwise be very hit and miss and remembering this helps.

jogalong Sun 16-Feb-14 20:18:05

Thanks girls for the replies. Iv come no this site numerous times and got great help and support. Iv always been posting that ds was suspected asd and I had no problem with that. But now it's official I'm floored. I suppose yes it will take time. If he's reassessed in a year time and he has improved can the diagnosis be reversed?
I'm just all over the place. I'm back to work tomorrow so hopefully the distraction will help clear my head.

AtYourCervix Sun 16-Feb-14 20:20:41

When DD was diagnosed (at 13) I was amazed at how quickly and easily they said 'yes, DD has Aspergers'. I thought I'd have a huge battle to persuade them but there wasn't and then I was shocked and gutted that actually it was obvious she has AS.

She's still DD in every way and having a diagnosis has helped her immensly (far more than me). I still (nearly 3 years later) am gutted that they didn't say there was nothing 'wrong' with her but it doesn't hurt so much now.

Levantine Sun 16-Feb-14 20:22:13

Jog, it is very hard, one thing that helped me a lot was asking the paediatrician who did the ADOS to go through it with me, so I could see for myself what they observed in him. I had the same feeling that they were going on what we told them, and what if we had got it wrong.

Our dx was in august and at the time I was pleased that he got it as at least he would get more support but tbh I am only really coming to terms with it now and I still question it quite often.

ConstantCraving Sun 16-Feb-14 20:23:10

Jog I think I will feel the same. just had an observation of DD by a specialist who says she's almost certainly going to get a diagnosis of autism. Like you I thought I'd be relieved that they 'got' that she has difficulties - but when they told me I couldn't stop shaking... even though they said lots of lovely stuff about her too. No formal diagnosis for us for another 12 months as that's how long the waiting list is. I guess it helps to remember that we want the diagnosis to get the help they need and the sooner that comes the better.

Tambaboy Sun 16-Feb-14 21:13:30

jogalong like you I didn't accept Ds' dx at first. When the paed gave us the dx verbally I thought she was being ridiculous, I was so shocked I was wondering if I was dreaming the whole thing!
I demanded some sort of tangible proof and I was so insistant that the paed agreed to carry out the ADOS with her colleague as soon as they could just to humour me.
Those few weeks in between verbal dx and ADOS I was so convinced I was right, that he wasn't going to get a dx .When they ran through every single score of the ADOS with us I found myself agreeing with them. I just hadn't realised that the sum of all his quirks and difficulties granted an ASD dx.

One of the best things the dx has brought is the fact that the school is applying for statutory assessment thanks to the autism advisory teacher feedback.

Hanginginthere123 Sun 16-Feb-14 22:52:15

please be gentle
what i find hard is other people's reactions
- friends asking to meet in the evening instead so we are kid free
- not including us in parties
- a couple of shocking things too painful to write!
These are people I can't just not see again cos of social circles/actually being related
I gotta toughen up hey
Some people have been great

Swanhildapirouetting Mon 17-Feb-14 12:54:23

I agree hanging. For us it started as a get out of jail free start with we are able to explain why ds might have difficulties with all sorts of things, not to feel judged if he behaves badly in public or school, that sort of thing. But then there is insidious way that once you do have a child with a label, people will use that as an excuse to isolate them.

I have quite a few friends and yes they are still my friends, who wouldn't think there is anything odd about the fact that they haven't invited ds2 round to play with their children the same age, because as he has Asperger's somehow the usual rules of inviting your friend's children don't apply. Maybe I'm guilty of not pushing harder too and the tacit understanding that some occasions "won't work out" has led to the isolation. Although there are other parents who do make a point of inviting ds2 round, repeatedly or including him - usually because they have their own experiences of special needs or they are just very fond of him, whatever his label.

OP dh used to accuse me of making ds2 sound far worse than he was, in the initial stages of having him referred at 7 years. When we narrowly missed the cutoff for autism dh said you see there's nothing wrong with him. A year later increasing difficulties gave us a diagnosis of HFA/Asperger's, as they had sufficient evidence. Now dh is in complete agreement with me that he has significant difficulties and needs significant support. Which we get from school as a result of his "label". And we also tailor make some of our daily life to support him too. Things like accepting he will not manage a visit from one of dd's friends without us explaining to him exactly what is expected of him (no bursting into her room, no making silly noises, a simple friendly greeting etc)

sweetteamum Mon 17-Feb-14 13:04:48

I spent months/years to get people to see what we see. All the experts 'got it' straight away, but the school at the time didn't. So I spent ages preparing documents for them.

Dd was given her diagnosis almost a year ago and I still have many "did I do right by her" moments and try to convince myself she's nt. there's no doubt about it though, she is undoubtedly asd and I need to remind myself of that more often.

Hanginginthere123 Mon 17-Feb-14 15:09:05

Thanks swanhilda - it is a really deep hurt I am feeling about it all in particular today. Maybe it is because it is holidays and to do with not being at school (which is actually really really supportive)
It has helped to read your explanation of them thinking "usual rules do not apply" on their part and needing to be proactive myself
Maybe it is just one of the steps I needed to go through in the coming to terms process

2boysnamedR Tue 18-Feb-14 23:12:23

However much I know ds is not nt and how hard he finds some aspects of life. Each time I have a fear confirmed its like a kick in the teeth. I can't imagine I will ever hear these words and not die inside a bit more.

But whatever I feel I know it's true. I could tell the world he is just slow - but that doesn't make it so. Neither did pointing out a his struggles to his pead make him dyspraxic. He was born that way and no words spoken by anyone can change that.

Some days are harder than others. But now people who where blind to ds can see his needs. It can only be positive. I really wanted people to tell me I was wrong and for him to wake up and be like other kids one day.

But this is a better place post dx. I understand him now. I get him. He's no longer a mystery, he is just my lovely sweet complex perfect little boy who is unique. He is finally fine to be himself. No need to change or cure, just understand and accept

jogalong Wed 19-Feb-14 07:14:06

As each day goes by I'm slowly accepting the diagnosis. It's not like I didn't have plenty time to prepare for it!
The written report will be arriving by post tomorrow so I suppose I'll be back on the floor again for a few days
Such is life

PolterGoose Wed 19-Feb-14 08:21:36

Message withdrawn at poster's request.

magso Wed 19-Feb-14 20:09:01

I think its a normal reaction. The same thing happened to us and ds is not HF so really academically it is hard to deny. The hard thing for me was the finality of a diagnosis - before there is hope you are wrong - indeed I think I wanted to be proved wrong and someone magically find something else that he could recover from!! Before the Dx I was looking at how well he fitted the criteria, after I kept looking to all the things that were atypical Of ASD or might not be that severe. Its part of adjusting. It took me a while even though by the time ds got his dx he was in a specialist placement and fitted in rather well.

However as others have said your child is still the same. A dx really only gives a set of signposts to help those who are there to support have a better understanding, and help to play to strengths. Lastly a dx is not necessarily unchangeable, and does not have to be shared.

Irishclaire Wed 19-Feb-14 21:18:53

Jogalong, I know how you feel, my ds who is 2 and a half is having an assessment for ASD in March for a proper diagnosis, although we have already had a neuro assessment and were told he is somewhere on the spectrum. I knew what the doctor was going to say but it didn't stop me breaking down. It becomes real, and I wonder what the future holds for him and for us as a family. I came across this piece which I think explains it beautifully.. you may already know it

Welcome to Holland

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

StarlightMcKingsThree Wed 19-Feb-14 22:29:26

Diagnosis is not the same thing as prognosis.

And ASD can present in more or less severity and move about depending on education, intervention, context and environment.

For the moment just 'accept' that he has a protected characteristic in law and that accommodation should be made for his needs. What those needs are called aren't necessarily important.

bochead Thu 20-Feb-14 13:02:27

^wot she said!^

Many a neurotypical toddler appeared to have a bright future ahead yet wound up in prison or a lifetime doley, or worse suffered a serious illness or accident along the way. Whereas many a child with a disability wound up as a successful adult.

It's a different path from one the majority of parents take that's true, but it's a journey of discovery and joy just the same. Autism is a series of developmental delays, not total halts, and there are so many factors that can impact on the final outcome.

I also think we need to allow ourselves to work through the grief process for the child we imagined at antenatal classes. It is like a bereavement and most people go through the same stages in parallel with learning to accept the new route map. Please don't be shocked if you hit a phase where you feel very angry at the world for a while for inflicting this upon your precious child, as if channelled correctly that's when you can utilise that energy to access appropriate support to ensure the best possible outcome.

jogalong Thu 20-Feb-14 13:10:46

Report didn't arrive in post today so have to wait another day!

zumbaleena Thu 20-Feb-14 13:41:12

Take care of yourself. This sounds hard to go thru but take 2-3 days off, watch films, eat your fab food and get ready emotionally and mentally for the fight ahead. You need to be a fit and strong mother. Trust me.....if you can be mentally strong, that,s it.....most of the other things will fall into place.

MandaHugNKiss Fri 21-Feb-14 00:10:05

We're nearly on the road to having ds2 assessed (seen ed psych who referred to SALT who has referred to developmental ped, a specialist salt, OT and starting me on acourse next week).

Maybe it's nothing more than quirks; maybe it IS asd (so recognising the hmm, I think maybe he's fine now that professionals are seeing enough to refer on - despite his almost 4 years on this earth have been marked by my instincts screaming at me that he was 'different'). But some of these posts have nearly moved me to tears in a good way - thank you.

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