Talking to DS about his Autism

[Rosietheriveter28]

Will try to condense this down as I'm sure it's been asked before and hopefully someone has some personal experience with this.

My DS is 11 and is going into a large state Secondary school in September. He is very high functioning and generally an abolsute joy to be around and a very content and happy child. However, because of his ability and the fact that he's going in to school in September (and it will be a big challenge, he's going from a small private school of 200 pupils to one where there are 7 classes of 30 in his year alone), I feel it might be time to tell DS about his condition. However, I am so scared. I tried once before when he was admittedly too young and he thought I was telling him off and started crying. Ballsed that up good and proper!

I just feel that we're getting to the stage where I shouldn't have to hide this from him (doctor's appointments are becoming a nightmare where I have to whisper 'autism' to them and hope he doesn't notice)and ultimately I want it to empower him, help him and hopefully enable people around him to understand.

He's already acknowledged he is a bit "sensitive" (his own word and one that Teachers use at school) so I feel this may be a good starting point but any advice would really really be appreciated.

Firstly welcome to the board and your DS (dear son) sounds lovely :).

My ds started secondary in September and it is a huge transition... And I do agree that explaining now would be a good idea. Ds knew before moving schools ( on reciept of his diagnosis).. Because he wanted to know why he was different from his peers and why he 'couldn't play like other children' ( his words ).. So it made it easier for us to explain.

However the fact that your ds has noticed differences already in theory should help.

Ds already had a dx of dyslexia so we talked about wiring and different processing and likened it to what he already knew and was comfotratble with.

We did throw in lots and lots of positives about ASD... Things that he found really easy compared to others, his focus and attention to detail, how he was wonderful person, who just thought a bit differently to some others.. We outweighed the bad bits with the good and then gave him some great role models ( computer programmer relative, engineer relative, and temple grandin and bill gates.. Temple grandin can be found on YouTube .

The main point was that it is absolutly fine and good to be different and that is what makes the world work... Lots of different people who are good and not so good at lots of different things... And how we can all help each other out.

Ds happens to be quite proud of who he is :) and telling him stopped him believing all the things he'd been told by not so lovely peers.

So I'd personally go With a bit of careful treading and lots of positive and it's absolutley fine messages.

Really hard one, this. I'm in a similar boat with my DS age 11 with HF ASD going from one form entry primary to 9 form entry secondary! We had never actively told my son about his diagnosis but had also never kept it a secret IYKWIM. We had a lovely advisory teacher who went into his primary in year 1 to give a ASD awareness talk to his classmates (which he didn't attend). It was brilliant, his class went overnight from calling him naughty and rude to accepting him and being very protective of him. I'm sure it wouldn't work in all cases but, luckily, it did for us. Therefore his whole class know he's autistic, his brothers (13 and 8) do and we talk about it in his hearing. It was just all over his head when he was younger, but I'm sure he heard us and just thought it's normal for him. Well, maybe?

We sat down and mentioned it to him recently as his new school peers will definitelyprobably not be so accepting or protective. We didn't want him hearing it first from them! We just said, "You know you get extra help at school, well, that's because your brain works a bit differently from most people. Not worse or better, just a bit differently. It's called being autistic." TBH he just said "Oh yeah," and went on playing on his ipod! I think that was enough for a first attempt. It's out in the open and we can be there to answer any questions he's got. With him unfortunately, that's likely to be none, he's currently not bothered.

There are some good mystery books, called Asperger Adventures or something for kids his age about a boy who gets an AS diagnosis. Blue Bottle Mystery I think. Recommended by that same Advisory teacher. My DS won't read fiction I'm afraid, so not much use for him, but have a look on Amazon.

I'm sure other people will have help that's more relevant to your HF DS, he sounds a bit more HF than my DS2!

Hi, dd1 was diagnosed with Aspergers at the age of 4, i told her last year (when she was 6) that she has aspergers, she had started asking questions about her sister who was going through a ASD diagnosis, she then asked if she had Autism (after i explained that dd2 has it), she took it very well, used it as an exscuse for a while ('its not my fault, i have AS'). I told her that the reason why she suffers from anxiety and crys a lot is because she has AS and thinks differently to some people, i also told her that her aspergers makes her clever (good and numbers and reading) and reasured her that AS/ASD is not a bad thing. Dd2 is only 5 with poor understanding but i still talk about ASD around her and will try and explain it to her when she can understand it.

ive told my DS (10) he was ok about it its just a word to him but he is sensitive about the traits trying to explain hes not the only one is very difficult i think to explain it further i might get one of the books or DVDs via NAS as i ballsed it up too , i made him cry and the conversation went on too long i felt awful it wasnt the telling him he didnt like its just it brought all the anxiety to the surface and he has such low self esteem as at his schools he had been bullied called smelly and fat (hes slim) and stupid(he really believes all this)but is so confussed in relationships esp with peers its one of the things in his statement his new school have got to help him with

Cross posted and wanted to agree with Carrotcake and Marne. There are lots of positives. We'd not have anything like so much technology if we hadn't had a load of unDX ASD and AS scientists and mathematicians in the past. Places like GCHQ have many a few unDX peolple and quite a few DX ones too as they value the different perspective, attention to detail, single-mindedness etc etc etc.

I have recently told DS1 he has AS, he is 8, I wasn't planning on telling him yet, but he was getting himself in a stew about playtime in school and not always wanting people around him. He already knew about AS as someone else in his school has it and they had all been read a book about it.
We talked about the positive aspects - he knows loads about Starwars etc, along with things that might make things harder for him. I also said that having AS is never an excuse not to do something, but we may have to find different ways for him to do it. I also explained that he shouldn't just go around telling people he has AS. He has told his friend in school, who apparently replied "I don't care what you have got I will always be your friend" which I thought was rather lovely . He wants to get a book to read about it - preferably the one he was read in school. So must get around to asking the teacher what it was.

Wow, thanks all for your input - sounds like we're all in very similar situations.

EllenJane1 - I was lucky enough to find a great primary school who did the awareness talk with his class when he started (It was part of a bigger strategy called circle of friends) and it helped immensely. He's now in the position of having some lovely close friends and is very popular in the current environment. His friends are amazing with him and instinctively know what to say when he's getting frustrated or anxious. I wasn't sure they would do this in secondary school (or that it would be effective) but I may ask for something similar to happen during his transition review later this year.

He suffers from extreme lack of confidence and low self esteem (it doesn't take a lot for him to start telling me how useless, thick, unpopular etc he is) so reckon getting the friends thing right is crucial for everything else to fall into place.

Those books sound like just the ticket too. I was given a resource by a friend who works with autistic / aspbergers children with worksheets etc but it all feels far too formal.

Marne - Interesting about your dd using it as an excuse - I can just see my ds doing that too! :)

Thanks again all, very very helpful.

Will any of his current friends go with him to secondary? Ask for them to be put in his tutor group, it'll be great to have some understanding allies who will hopefully influence the behaviour of the rest of the class. Most schools will do this if requested.

let us know what the book was called please littlemissgreen as there are so many books to chose from its rather hard to know which ones appropriate ty

My DS (HF ASD)went from village primary (200 pupils) to state comprehensive (1300 pupils).
Had a number of extra transition visits before starting and seemed to cope ok. Behaviour a bit of a struggle at first but school very consistent with response so that has now improved. Plenty of 'interesting characters'(assistant headteachers description) in the school so he doesn't stand out that much. TBH we have had more trouble with some of the TA's who were supposed to be supporting him than we have had with other students.
I'm sure that in a school that size your DS will find some 'like minded' peers to be friends with.
Good luck with the transition.

EllenJane - Sadly he is the only one leaving this year. He goes to a small private school out of area where the boys stay on until 13. I felt DS needed to make the transition at the same time as others in his new school to have any hope of fitting in. I did look for another private school but none seemed to have the right attitude towards DS's condition, plus whilst DS is capable academically, the ultra competitive environment just wouldn't be for him. It's almost guaranteed he would be miserable. Luckily his new school is one of the better ones in London and we are lucky to get a place. It's just the culture shock we are going to have to manage.

Bigbluebus - thanks, I get what you mean about the TA's, I'm also worried about this as it takes a while for DS to trust people and he has had the same one for several years in his current school who is very good. However, at least I can get involved in that if it starts to go wrong. Our Local authority is absolutely useless so I'm going to be pretty clued in to what is going on just to make sure the statement is being properly supported / translated to the school. Can I ask - did you request extra transition visits or were they provided automatically?

I also didn't mean the above as anything against state education as just read that back and it seemed a little dismissive! :)

We told DS when he was around 7 as he struggled to understand why he was different to other children.

He is now in Y7 and coping well thanks mainly to a fab SEN team who handled his transition well - extra settling in visits, photos, recording sounds, building plans etc etc

If you scroll down this page there is some good stuff on transition

My DS2's prospective state secondary does lots of extra visits automatically for children with statements. Don't know about SA+ etc. The secondary's integration TA came to his Y5 statement review and we all have a multi party transition conference in March to include current senco, TA, advisory teacher, new senco and/or integration TA. Oh yes, and us his parents! This is in Gloucestershire and state primary to state secondary. Not sure how it would work for private school to state school (or indeed new state academy). Maybe time to start rattling some cages?

Also current school has access to advisory teachers (like inclusion team elsewhere) who have DS 2 doing some preparation activities for transition with his TA. I'd say in many cases state ed SEN children get more support as good LAs have lots of expertise (if no money). I'm getting worried about the trend for academies as they'll be no money at all for central services such as SEN.

Lastly, my DS2 will only have 2 girls going with him from his lovely supportive primary class so on same boat really. Hoping he'll find other 'quirky' like minded friends in big enough environment.
This is all getting a bit off thread but thought it might be useful.

Rosie Extra transition visits were suggested at his annual review in Primary which SENCO from Secondary school came to. Was taken by his TA at Primary although DS did think some of the things they did with him were pointless (eg standing in corridor at lesson change to see if he could cope with the bell ringing and the crowds!)So they weren't quite in tune with his needs!
He did also do some 1-1 work at Primary with outreach worker from local ASD school who helped him put together a Passport about himself (likes and dislikes - including things such as 'I don't like people shouting at me & don't like people joking about me' ) for circulation to staff at new school.

Lots of preparation seemed to make the whole transition go smoothly. School had a room he could go to at break/lunchtimes so he didn't have to hang around outside (unstructured time is when he gets into trouble) and that room is where he met 'like minded' children who all seem to hang out there on computers.
He has stopped going there (in yr9) now as he prefers to go with other friends to library/ICT room.

Hope you can get the support for your DS in transition our DS got. Secondary is very different. DS has different TA in every lesson and sometimes its not the same one 2 weeks running. If that's not something your DS could cope with then obviously you need to address that now. Good luck

bigbluebus makes an important point about different TAs - DS went from two regular TAs at primary to subject based TAs so had to get to know lots of different people and they had to get to know his foibles

Hadn't thought of that. I'll have to keep in mind to ask about it at his transition conf. I suppose it gets to the stage when you need specialist subject TAs as I for one wouldn't be able to help in Spanish at all or biology etc after about year 8!