My nephew has just been diagnosed with Aspergers & the family need some guidance

[melsy]

My sister doesn't quite yet know how to explain it to her ds2 age 6 or their dd1 age 8. Her ds initially showed signs of OCD and had behavioural problems at school, which caused a lot of distress all round. Its finding the appropriate language for their ages so they get some understanding without overloading them.

To be honest most of us only know a little about the diagnoses. We know it affects more the social, emotional & behavioural aspects but in most cases not the academic/ mental abilities. My sister has looked for books on the subject , but just doesn't know which ones will be best for guidance, also if there are any online support groups or any other professional bodies to go to?

Shes upset that she has been handling it wrong all this time , but we assured her that she didn't have the diagnoses till now and has done the very best she could with what she knew. Her main concern is knowing how to handle discipline , so we all know what do to as I sometimes look after them all together with my 2 dd's.

My sister is not surprised by the diagnoses , but I think she's in shock and were all finding ways to support her. Looking at it optimistically , we know now that his school will be very much in support of what his needs are as they urged my sister to organise seeing a psychologist over the last few months. It means he will not just be labeled naughty which is what was happening.

We would really appreciate some direction.

[basementbear]

Hi, if you need advice you have definitely come to the right place! There are some very supportive and knowledgeable MNers here who I am sure will be able to help. I am a bit of a lurker as I am going through what your sister is experiencing - my DS2 is 5 1/2 and we are in the process of getting a diagnosis for him. I have found loads of excellent ideas and advice here.

I am a bit confused though - is the DS with Aspergers her DS2 aged 6? Or is it another son? I have another DS who is 7, and I have been trying gently to explain to him why his brother behaves the way he does and how to deal with it - so I will be watching this thread for advice too! In my case, I have kept it as simple as I can, explaining that we all react in different ways to certain things - just like some of us prefer particular foods/toys/etc, some of us also prefer to do things in certain ways or get upset if things don't happen the way we imagine it will. I've tried to reassure DS1 that there is nothing "wrong" with DS2, he just views the world in a different way sometimes!

I felt the same way as your sister. Although I new it in my heart, it was still a shock to have my concerns confirmed, but I too feel that I would rather get the diagnosis and be in a position to understand my son more and to get him the help he might need at school.

Sorry to waffle on, I am sure you will get loads of help and I know your sister and her DS will be fine - it sounds like she has got lots of support and understanding from her family.

[amber32002]

Ooo yes, shock is definitely the right word, even if people have already suspected it. I guess most people hope that the consultant will say "Nothing to see here - move along please ". When they say "Ah well actually yes, it's an ASD (autism spectrum disability/difference)", people do indeed respond by imitating a goldfish/bursting into tears/going all shaky/needing a strong cuppa.

But we're not that bad. I'm an adult with an ASD. I'm a mum, married to a man with an ASD. Many (not all) of us do mature eventually into fairly sensible people (no debating that point please )

It's good news, as you say, because it means the family can find ways that work. So can he. So can the school. But it's a steep learning curve, or rather an unlearning curve, since you also have to unlearn all the things that apply to NT ('normal') children and relearn all the things that work for children with an ASD.

Where to start...the National Autistic Society has good advice, info, links to local support centres and charities, books etc. Their recommended books list is pretty good.

How old is your nephew? I'd say the Freaks Geeks and Asperger syndrome book is alarmingly titled, but really worth a read. Very funny in places, and very useful. Written by a teenage lad with an ASD.

Have a look at the Tony Attwood website. Easy to find by putting his name into a search engine. He's an expert on Asperger syndrome and has a lot of positive things to say about it.

"We know it affects more the social, emotional & behavioural aspects but in most cases not the academic/ mental abilities."

Umm, not exactly. Hmm, how best to describe this. We're specialists. Extreme specialists. Our brains are wired for extreme speed, but almost no ability to multi-task. If you start with that understanding, you can see that it can and does affect almost any part of life, including academic stuff. But in curious ways.

Social things? Your brain can automatically check for any and all body language, facial expressions, eye contact, tone of voice, where people are pointing, what the hidden meanings in their sentences are. You can calculate this for a whole group of people all at once. We just get a wall of noise and people moving strangely. And it hurts, too - it's like someone plugging every single appliance in your house into just one socket. It'd overheat. So do our brains.

We need to focus on just one thing at a time, just one person at a time, and then on just either listening to them, or watching them, not both.

But goodness me, we're often brilliant at noticing detail, sensing things you can't see, hear, smell, taste etc. Those sensory issues that many of us have can work in our favour as well as being a nightmare if we can't switch off from them fast enough.

It's fascinating stuff. Not easy, but fascinating.

Much to learn, for everyone. Plenty of lovely people here to help, too.

[HelensMelons]

Hi Melsy

My ds2 has an asd, he's 'high functioning' and he also has speech and language difficulties. He is 8.

We have used a blue booklet called I have Autism ... What's That? by Kate Doherty, Paddy McNally and Eileen Sherrard. I have a feeling that this is local to our Trust. (ISBN No. 1 899280 79 0). It is a very simple book but is great for breaking the news to the dc with an asd or his/her siblings. It's what I used. I could post a copy if you cant get it.

Having a dx has proved very positive for us, ds2 is quirky and it's great to be able to provide an explanation for his quirks, particularly to other children and his siblings. I feel that DS2 is, therefore, better understood by others. He also receives all the services he needs and is progressing very well!!

[flyingmum]

There is a really good book for children and also parents called 'All cats have Asperger's Syndrome' It's rather sweet.

Actually I have not yet explained to my younger DS (aged 8) about his older brother who has ASD amongs other stuff. I think DS2 thinks that everyone gets to jump the queue at Legoland! I've started dropping little hints into conversation. We didn't tell DS1 until he was in year 6 and he just accepted it fine. I think if the parents don't do hand wringing and mega stress then the kids don't either.

[TallulahToo]

I found ToddWorld on CBeebies helped me show my children that it really is ok to be different. We watched it for months and talked about it for a while but I found that just dealing with the questions he asked were enough and any more than that was not what he needed at the time.

Now after the much recommended drip-drip-drip approach, my DS(8) feels quite good about being different in some ways and this seems to have come across quite well to his peers too. He knows he sometimes has a different way of thinking about things and that it is called autism but that really is ok with him. He even asked his mainstream mates if they wanted to be autistic too - as though it was some kind of really cool gang to be in.