ASD and others who don't really see or know

[WeThreeNinks]

Can anyone please help?

DH and MIL do not want DS "labelled" but I don't want him known as the naughty child.

MIL is a secondary teacher who sees DS twice a year and there is nothing wrong according to her.

She communicates this to DH.

Perhaps I should let MIL look after DS for a day so that she can experience the meltdowns.

Tell them that labelling is not a choice.

You either get a formal 'label' of autism with help, or an informal 'label' of naughty with punishment for something that wasn't his fault.

Unless you have the resources or finances necessary to ensure that you get help rather than punishment for behaviours then it's really a no-brainer.

Yup. If we had a child who was blind, would it help for people not to know and for that child to never have the 'label' of blind? Would it help if people thought they could see and just got angry with them for doing rubbish real-life-drawing artwork or falling over the furniture all the time?
It's a mystery to me why ASC is seen as being an unhelpful label by some people.

Tell them it's a diagnosis, not a lable. I hate the term labling, it almost sounds dirty. People with visual disabilities aren't labled .

IMO a dx is very important, as you can get a lot more help.

In our situation, looking towards ds2's (8)future there are much crueler labels that his peer group will/might call him at least the 'label' hfa/adhd provides an explanation and if an explanation leads to a discussion with that peer group and maybe even a bit of empathy it's more than worth it.

When DS first regressed I talked to a Mum at school with a Downs child. She said she sometimes wished her DD did not look disabled as people made assumptions that she could not do things when often she could; and she told me her friend whose child had ASD often wished he did look disabled so people would understand and not judge. Many children out there have obvious features of their disability and don't have the choice whether society labels them or not. Its sounds as though its the adults who are thinking of themselves and their wish to keep it quiet but not whats best for the child. My friend with a Downs child had to accept that reality when a doctor visited her an hour after the birth. We get longer to accept the reality but that doesn't give us the right to hide it under the carpet and leave the child to the mercy of peoples judgments about them. Self esteem can be a big issue for children with autism and I don't see how you are going to be able to make your child grow up feeling positive about themselves if you teach them to be ashamed of who they are or leave them confused and bewildered. You don't have to share the diagnosis or label with everyone if you do not want, you could choose to just share it on a need to know basis. If your child had epilepsy you would want everyone to know and watch for seizures / know what to do etc; its the same thing really if people know what to look out for and how to react the chances are your child will fare better.

The 'label' gets them help. Without it it is a million times harder to get the support they are entitled to and without which they won't make as much progress.

Fantastic replies, thank you!

My mum who sees DS a few times each week doesn't want to know either, so I feel very alone coming to terms with this and you are helping

It's hard isn't it Nicks? This stage in particular. What you wouldn't do for it to not be true eh?

I remember posting on these boards feeling like a fraud because it was surely all just a big misunderstanding, and thinking that it was such a shame for these people on here and I feel for them, but I wasn't one of them, not me, it's just not how things are supposed to be.

My parents told me recently that when they first started to come to terms with it they were wracking their brains to think of whether something they did caused me to make the choices I did that led to ds having autism. Don't underestimate the impact it can have on them, but also don't pander to them at the risk of your ds not getting the help he needs. He can't wait for them to be comfortable with it, and you can't take on their emotions as well as your own right now, so try to just keep the peace whilst you follow your instincts.

hth

Oh Star / FNN that is just what I wanted to hear.

I have had a heated discussion with DH about this which has ranged from there being nothing wrong with DS and it all being about me wanting attention to me having two glasses of wine at Christmas when I was pregnant and damaging him

The idea of DS having ASD is of course the last thing he could have according to DH who has done NO research at all, not any.

I am now lying low and being a bit scared to talk about it with him any more.

Arrghhh!!! What is your DH like!?!

He should realise you can't get ASC from two glasses of wine: It's a different brain design. It's like suggesting that if you sprinkle whisky over a Ford Fiesta it'd change into a Land Rover.
Yup, avoid the subject with him for the minute.

I was reading a book a few days ago about a woman reporter in the 60' and she and her friends drank (+ smoked) fairly heavily by modern standards during pregnancy and did not have FAS or ASD children. I wouldn't advise anyone to do what they did now but I still can't understand why the rate of children with developmental issues has increased rather than decreased since new health guidelines came in. There was also an item on Womans Hour about a woman who had many alcohol binges during pregnancy and whose son had emotional issues that might or might not be related to FAS but he was certainly light years ahead of most autistic children I have ever heard about.

I worry too sometimes but was cheered up when one researcher on a TV program said 'FAS' children often had good communication skills . Definitely rules us out!

sorry your DH isn't being particularly helpful. Especially taking into account the circa 50% of unplanned PGs, i imagine there are few PGs that don't involve the odd unit of alcohol at some point, particularly given the guidelines only got so strict v. recently, when I was PG 6 years ago the gov guidelines were 1 unit a DAY was OK!

your dh seems to be in denial at the moment. Can you leave dh to look after ds for a weekend by himself with no support? He may change his mind if he sees ds's issues more clearly for himself.

Bit at your DH. I think he is in a bit of denial about it all. I would say it takes a good year or so to come to terms with a dx, formal or not.

Amber, I love your take on the alcohol thing. Wonder if I could do that to my car

Thank you, I must admit I should have left it yesterday but kept pressing DH. He needs to come to terms with it himself without constant pressure from me.

I suppose it's difficult because everything has just all fallen into place for me having been at home with DS for two and a half years and having had a toddler before (DH came to live with us when DD was a rather mature three years old) and it's different for him.

He has taken a lot more on board today and has pointed out several times when DS has been behaving strangely and / or having inappropriate responses. He has been talking to MIL too.

I have found a way of phrasing things to people which is helpful too. DS is clearly a clever and special little chap and I do not want his learning to be hindered just because the way he acts and reacts isn't being properly managed. Well I think it sounds quite positive...

Thanks again for the support

Thats good news, it will take time I wrote some pretty in denial posts at the outset I'd be embarrassed by now. Few Dads get to go to the toddler groups etc so aren't able to compare as much as we can. Often its only when they see children with their peers they notice.

Lots of people want to look for a reason, but in our case there isn't any obvious one. There are no ASD traits in the family -and we had two very bright typically developing boys before DS3. I did nothing different this time around. Some twins have one with ASD and one without. A blame game isn't going to help anyone.

If you (or your DH) want to read something upbeat and hopeful, there's a book by Lynne Koegel and a parent its called "Overcoming Autism" a bit of a naff title - the parent in question's son had a good outcome from Koegel's intervention (pivotal response therapy - a form of ABA - see also Early Denver model which published positive results recently). I think I got it pretty cheap from Amazon seller - its a bit american but a nice book to start with. It would be good for your DH (although written in a bit womens magazine style) because its upbeat about possible outcomes and because its very anti wait and see, it says if you see behaviours even if they are mild or not sure if ASD, start working on them. Its also not (despite the title) of the autism can be cured variety - it does explain how hard work it is to get a good outcome and that not all children will be capable of this. Its quite realistic about how much hard work is involved but also that doing nothing is likely to make things worse. I found it nice to read a book that was positive but not too technical (although it is ABA biased).

I don't know much about ABA, still trying to take a lot of things in but the book looks really good, grumpyoldeeyore. And very reasonably-priced too.

Luckily I am expecting a lot of vouchers for Christmas!

Thanks for your reply - upbeat and hopeful is exactly what we're after

Ninks When I was in your shoes I was worried that ABA was a bit of a regime or cult or clever marketing and I was wary. It seemed like a lot of hard work and very expensive and it was difficult to know if the pay off was truly worth the effort. I thought too that it was perhaps one of those wierdy things that you have to buy into full of secrets and effective only if you believe.

Be rest assured that it is nothing more than data-driven evidence-based practice. It isn't a miracle and it isn't complicated. It is however quite a committment.

The reason it felt like it was something shrouded in secrecy is because, quite frankly, it is. The reason for this is that Local Authorities are so against providing it or supporting it due to their short-term budgeting that they are all brainwashed against it and so parents are kind of forced into an underground network and when you are on the outside of this it can look quite daunting iygwim.

Whether you set up an ABA home programme or not, I would strongly recommend that you investigate because even if not done intensively, there are quite a few skills that any parent can find useful.

hth

Yes I did a quick google and at the "40 hours per week of intensive therapy for two or three years" at a cool 20K per annum!

So that does help, very much. If it's good practice and I can implement something and have some tools and skills then it's all good.

Best of luck with the smuggers btw

Ah no. Don't worry about that. The more intense the programme, the faster you progress through it that's all. It has an expotential pay off, so 15 hours is twice as fast as 10 hours iyswim, but don't get into a panic about that. We are all living in the real world.

The most important thing to remember is that 'generally' a few hours a week of ABA is more effective than anything the LA can provide and more satisfying for the parents because you can see and have input from day one, the assessment process, the gaps in development, the areas to target, how the targets are broken down, and the exercises to help meet the targets. No two children will have the same curriculum. No assumptions are made about what their weaknesses are as it is continually evaluated and tested and provided you avoid the cowboys (sadly there are a few) you work with the consultant to create a package that works for your child and your family.

Anyway, not everyone goes down this route and I won't pretend it is easy, but the more I read about it the more I knew that I would have to have a very sound rationale for NOT doing ABA and tbh I couldn't come up with it. If you search for my posts (under StarlightMcKenzie) around about the end of May/June time you will see the beginnings of my journey. Don't remind me of those embarassing posts because they are in my past, but you might find it helpful.