My son has just been dx with an ASD.

[PedanticPanda]

I was all geared up for demanding a 2nd opinion after being told no dx, but it's hit me like a slap in the face and I just sat in shocked silence for the majority of the appointment, aside from mumbling a few questions.

Thanks everyone for all of your advice and support, I came here a year ago (ive had a few name changes though) when I first suspected asd and you've all been just wonderful.

I thought I'd be happy after fighting for an assessment for so long, or even relieved, but I feel the opposite is this normal?

and welcome to the SN board.

How old is your DS?

Its perfectly normal. It's because we cling on to that hope that there is actually nothing "wrong" with them, that they are perfectly fine.

Getting a DX is very stressful, it'll take you a good year to get your head around it, because you're grieving for the child you thought you had. In fact, your son is still that child just with a reason behind his behaviour.

Hi, we got our dx a few months ago. And yep it is normal to feel like you've been slapped.

He's 5, people keep saying that it could be worse and it is manageable and such and such famous person had it, but that isn't making me feel better. I know what they're saying is true but I still feel shit.

Oh, I'm sorry you've had this news. Even if you 'knew' and even wanted a DX, it's still hard to take. It feels like that last secret hope gone. Do give yourself time to come to terms with it. I coped by immersing myself in interventions and never looking too far ahead.

I know it's a bit of a cliché, but remember, your DS hasn't changed, he's still the same lovely boy, it's just a word and one that will help your DS to access help and support. ((((hugs))))

Exactly what 5inthebed said.
I was fully expecting to be told ASD. I had really hoped that it wasnt. Didn't realise how badly I would take it. I was quite numb and didnt take in much that was said.
I knew how bad his problems are. But I really wanted it to be bad parenting or something I could change.

A year later I have my head around it most of the time and have fought the good fight to get him help in school, SALT, OT etc.
But it takes time- thats normal. Have some .

In another while, you'll be able to look and see he is exactly what he has always been. And the label is useful for communicating with clued in professionals.

Try ignore peoples comments for a while, they are well meaning but probably a bit more of a slap in the face.

It will take some time to process.

So what are your next steps? Inform school? Apply for DLA? ANy courses you can attend?

Crossed with you. Other people are trying to be supportive, they think that playing it down will bring you some comfort. They don't realise that it just makes you feel like they are not taking you seriously. It's shite. You will feel shite, but you will carry on because you have to and your DS needs you. We will hold your hand along the way.

The thing to hold onto is that no two children on the spectrum are the same, so you, like every other parent have no idea what the future will hold for you or your children.
My DS has AS and is half way through his A levels, has friends and is lovely. Another boy we knew when they were both in primary is violent, verging on alcoholic and his parents despair of him, he's NT and very bright. Just lost his way ATM.
Yet when they were both 6, it was my son that was struggling every day.
Yes, it is normal to feel sad, angry and sometimes randomly guilty. Then you start moving forwards with your lives.
There's a good community on here for support advice and shared stories, with no judgemental opinions about you or how you cope. Just friendship.

My paed rang me to confirm my suspicions. Depressing reality check, but onwards and upwards. I was relieved in a funny way, because I hadn't been a neurotic mum. I had been right. Then I threw myself into every ASD course I could get my hands on, read loads of books and three years on, we're still trying to make the best of it and take each day as it comes. It always feels like a two step forward, one step back thing. I have lowered my expectations and celebrate his small successes and achievements as if they were major milestones. He is still my lovely boy regardless of a dx.
Be kind to yourself. You need to process it all and maybe refocus on the "what next". x

Of course its normal. Take your time and remember that the future is still to be decided. It happens day by day and this isn't the end of your or your child's future. The DX will help you going forward to leverage help.

Don't forget about you in this, you need support too..."you're grieving for the child you thought you had"...absolutely correct.

Don't know if this is allowed here or what your personal beliefs are but I offer a little prayer for you all.

I can relate to what you are going through, Dd3 was Dx'ed last September after a fight with proffs that took 3.5 yrs. I was pretty much certain that she had it and went to the final appointment ready for a fight.

When the psychiatrist said she was giving a dx of ASD I nearly jumped for joy but that night it hit me like a stone and it took a couple of weeks to get myself back together again.

Be kind to yourself, try to take some time out and eat cake and chocolate.

He is still your lovely little boy and his diagnosis will help to point people in the right direction to support him.

Good luck

Slapped and numb. Yes remember it well. Then years later Ds 2 (NT) is diagnosed with type one diabetes. Everone chunters on about are we ok and such a shock, major tragedy. Nope, walk in the park compared to Ds1 being autistic. Diabetic, well you get a nurse, you get people making a fuss, you get medical intervention, hell, we even got the consultants mobile number and he's told me off for not calling when we had a problem (nothing compared to three hours of tantrum from ds1 - no bloody consultant then). The diabetes thing is annoying and it does cause an extra layer of difficulty but its solvable (thank (god every day for the incredible man that found insulin). Our eldest was diagnosed with autism, we got two leaflets then nothing. Everything else we have done ourselves.
On the plus ds1 is the nicest person you could meet and the two boys look after each other beautifully. The fact that they can both qualify as young carers for each other is a bit ironic but hey ho.

I am going to send you some and some xx

Well done on sticking this out for your DS and hugs because yes its hard. You wait to hear and when you do you want them to repeat it 50 times so it sinks in.

No one can foretell the future and yes well meaning friends do annoy because they really dont know what to say when infact its best they say nothing at all but hug and a smile and say "well thats that we are here for you" :)

No one can predict but you have just given yourself a head start in transforming his future in a far much better way than his needs being hidden and ignored so be proud of yourself Mum :)

Thanks for all of the kind words, once again this board has been amazing and such a great support. Thanks for the prayer too I'm not sure about any courses or anything, i'll need to find out if there are any on, I seen one advertised last week but was still holding out a tiny bit of hope that he didnt have it so didnt write the details down.

We've got a meeting with camhs, his paediatrician, possibly an OT, and his head teacher in a month so I'll be able to find out what help he'll get.

The dark days post-dx are awful, even when you knew, even if you thought you were prepared - always a part that clings to the hope that you are doing something wrong or our dc will suddenly flip a switch in their brain and all will be well. With the dx that hope is gone, and bang goes your control. I remember family and friends playing down the ASD dx for my ds - I just wanted to scream I don't give a fucking shit that such and a such has succeeded despite blah blah blah - you can get on with your life but this is my problem!!!!! I was angry, bereft, scared and lost.
This won't last - not right now but soon your fantastic fighting mum gene will kick in again and you will do what's needs to be done. It's a brave thing to fight for a diagnosis and a braver thing to accept it. You're doing really well give yourself the time you need to settle down - it does come. Stay on here for me, this has been the best support and the best source of info. Hugs and best wishes going out to you

We knew the dx was coming with DS2 and still felt like we'd been hit with a ton of bricks. I well remember saying to my DH "what if it's not this? What if we're just crap parents and he needs better parenting? what if.... " Ironically it seemed a better option for us to be crap parents than him to have ASD or SNs in my mind - at least that could easily be fixed, right? I agree with Ellen that it's like that last little secret hope is dashed and it's just devastating.

This is where I at the moment.

This is my thread:

www.mumsnet.com/Talk/special_needs/1547380-Camhs-and-Attendance-Assessment-Group

I know there is something wrong with my DS age 9 but if we do get told it is autism it will be a relief but upsetting - very confusing reactions!