is it inevitable? and what should we do?

[Rillyrillygoodlooking]

I posted about a year ago, about my DS, when he was two. The SALT in the UK said she thought he was autistic. We were shocked but not surprised IYSWIM. Nothing really happened on that score after that, as it wasn't clear and DS is hard of hearing so some of his behaviour could have been linked with that.

Now, a year on, we are in New Zealand and have been refered to a paediatrician as we had been seeing one in the UK. We had an initial home visit for the paediatric dept to get some background on DS before the proper appt. The lady who came round spoke to our advisor for Deaf Children and asked if he had any concerns about DS's social interaction and play. He said its too early to comment as he has never seen DS with other children.

DH doesn't want DS to have a label and wants help if necessary but without a diagnosis. But he still thinks that DS doesn't need hearing aids even though it is obvious he is moderately deaf and asks for his hearing aids to be put in!

We are argung a lot and at odds with each other. I think we should let things happen as they happen but I know that DH will fight it all the way as he has done with the hearing aids.

I don't know what to do. What would you do?

I agree with starlight, fight back. Your DH is holding your ds back, he is in denial. does he think if he refuses to believe there is a problem then it will go away? It won't!
Your ds will not get any help with out diagnosis, I am afraid that is just the way it is and your dh needs to be told that, maybe he needs to hear it from a 'professional' before he will believe it.

DH wants the best for him, but he sees it as a label that will make DS into an invalid.

I don't think that is the case.

Part of me wants to know either way, which DH thinks is selfish as it is just to make me feel better, which I partly see his point.

The deaf advisor said that we are all on the spectrum and it maybe that DS is a bit further along it than us.

I would like some strategies to help DS with certain things, over and above the kind of things we know to do because of his hearing.

DH acknowledges DS needs his hearing aids but quite grudgingly IMO.

I am sorry, that last post sounded so horrible, it wasn't meant to be.
You do what is best for your boy.

DH seems to have a deep mistrust of all medical professionals and questions everything.

He does seem to be in denial but has ways of phrasing things that makes it seem like he isn't.

That is a man thing rilly. My dh was very similar, I just went ahead with everything and let him vent, I did all the appointments on my own and just didn't tell him until after we had been, just gave him vague details until I knew for sure what was wrong. We had a few weeks of hell, bought him a book written by a dad which really helped.

DH would go ballistic if I didn't tell him about appointments!

Could you give me the title of the book pls joneses and I might try and get DH to read it when he has calmed down.

Your post didn't sound horrible, just realistic, and says stuff which I have kind of told DH.

DH blocking you makes me so cross. I also don't understand why some people are so wary of labels?

This topic has been covered many times - and I know some people do have a problem with labels. But here are some of the main points that come up again and again:

• Better to be 'labelled' ASD, then 'naughty', 'slow', 'disruptive' etc.

• School can't help your son without a label. They have to treat him as NT and punish him etc accordingly

• with a dx you have access to loads of resources like this board and books and things. Without a dx you'll probably feel like a bit of a fraud...

• as you son gets older he'll want to know why he's different, and be able to research loads of things for himself if he haves the correct label to research.

• while there is no cure for asd, there are loads of treatments that help, like occupational therapy for example, and you need to be 'in the system' to get referred.

If he doesn't have ASD then your DH has nothing to worry about. If he does have ASD your DH needs to come up with a seriously convincing argument as to why he'd want to deny support and help for your son.

Also you don't need to tell anyone your dx if you don't want to.

DH has spent the last half hour doing an Mchat questionnaire online. I think that's what its called anyway.

I asked him if this was to diagnose DS himself and then tell the professionals where to get off. DH got huffy.

DH wants the help without the diagnosis. He thinks that someone who has never met DS before should do this questionnaire on DS. Well, the lady who came round last week had never met him and immediately had her suspicions.

Its all really confusing. We shall see what the paediatrician says on Wednesday. DH will only trust paediatricians it seems. And hopefully he will trust this one and not just the one we saw in the UK.

When it comes down to it, I hope that I will have the strength to fight my corner on this one. I didn't with the hearing aids and we waited till he was six months old.

Rilly,

Your H being stupid like this as well will just make you feel more resentful of him and that will affect your relationship. He is acting truly selfishly here. If your DH truly wants the best for his son then he should go all out to support you and his family unit. He is not doing so currently and being in denial as he is will only hurt him and your son in the long run.

I feel that a "label" should always be seen as a signpost to getting more help.

Same with school; your DS may well need extra classroom support; without a DX this is harder to obtain.

Without a dx as well many doors remain closed. Your stupid DH needs to get over himself here and grow up.

Tough situation. I say if you are the primary carer then your life is more affected by DS's condition than he is. You will have done more research than he has, talked to more parents who have been there, done that. A Dx gives you, the primary carer, the confidence to move forward - you are the one struggling to keep sane, constantly worrying, keeping the family together under the pressure that living with ASD brings. With all due respect to working mums etc, someone who is out at work 35hrs a week gets to switch their brain off that particular subject some of that time. You deserve a DX for your DS because you deserve the help that it will bring. He needs to realise that that you are not just a parent but a carer too - you already have a label so why not DS? In fact, you all have a label already - you are an SN family. Just like all the people that you've previously thought of as saintly types with halos - you are in the gang, embrace it (and the black humour that goes along with it).

Thanks for your replies, they have made me feel less in the wrong.
Unfortunately we couldn't take DS to his paediatrician's appointment this week as he was ill. So that has delayed whatever was going to happen.

DH now thinks that everything will be ok as long as we get DS potty trained.

In the mean time I will over analyse everything DS does and try not to think about it all at the same time.