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Senco thinks ds2 may have aspergers - what do we do now?

23 replies

harrietspy · 01/12/2012 00:09

DS2 is 7. His Y2 teacher recently asked the Senco to assess him as she was concerned about aspects of his behaviour (not disruptive, but increasingly anxious). Lovely Senco at school spent ages with me asking me loads of questions about ds2. She made it v clear that she wasn't in a position to diagnose but said her son has aspergers and my ds's behaviour sounded v similar.

I've done a bit of cursory looking online and some aspects of aspergers really resonate, others not so much. Whether my ds2 has aspergers or not, he has issues he really needs help with. I'd really appreciate it if you'd share with me any books/websites etc that have helped you to support your dc with aspergers while I decide what to do next. Thank you!

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HotheadPaisan · 01/12/2012 07:47

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HotheadPaisan · 01/12/2012 07:59

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PolterGoose · 01/12/2012 09:32

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SilkStalkings · 01/12/2012 10:08

Make a list of Asperger traits you can see plus a list of problems that need addressing, get report of finings from SENCO and visit GP to refer to a development paediatrician. It will take months so get started.

harrietspy · 01/12/2012 11:39

thanks so much. Will have a good look later.

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harrietspy · 01/12/2012 16:56

Does this sound like aspergers?
Doesn't like strong smells, loud noise (unless generated by him)
Volatile temper
Can be extremely focused (eg on Lego building, reading comics)
Builds same thing over and over
No imaginative play but very creative
Advanced literacy and numeracy skills but seems socially immature
Has difficulty relating to other children and forming friendships - extreme responses eg inappropriately affectionate or separating himself from group
Super-honest even when it's not appropriate (eg this is a boring present. I don't like it).
Hates making mistakes.

Or is this how it is to be 7? (Ds1 is nothing like this)

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HotheadPaisan · 01/12/2012 16:59

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Ineedalife · 01/12/2012 17:08

TBH, if the SENCO has experience of living with Aspergers and she is seeing red flags in your DS then it would probably be worth following it up.

I think your list does have some red flags.

I would recommend keeping a diary of any issues/difficulties that he has, what causes them if you know and how you deal with them. It may be that you are brilliant at meeting his needs and this can mask some issues.

Also do some more reading and come on here to ask more questions. If you think it would help your Ds to have full assessments you can go to your GP and ask for a referral to a developmental paediatrician. Take your diary with you to show the GP.

Keep talking to your SENCO, she will be a great support to you. The one at Dd3's school is fab.

Good luckSmile

harrietspy · 01/12/2012 18:11

Thanks so much again!

I really don't think there is anyone else quite like him in the family, Hothead. I've always thought ds2 was like me in some ways (early reader, ahead of peers in literacy, creative, hates failure, anxious) but there are a whole raft of behaviours that I don't think I have. We've always just said, 'o well, that's how ds2 is,' and tried to accommodate his idiosyncracies. In the car today he was getting really wound up telling me about an incident with his friend's dad - let's call him Bob. Ds2 told Bob he'd seen Mo Farrah and then David Tennant on different billboards and Bob kept saying, 'where? Are they on the street? Is Mo with David?' DS2 got really wound up and started saying how much he hated Bob and wished his friend didn't have a dad... I tried to explain that Bob was making a joke, but DS2 said, 'it really upset me and he shouldn't have said it.' I have no idea if this is anything to do with ASD but it's certainly the sort of thing that drives him crazy on a regular basis.

My concern now is that I'm interpreting all of his behaviour through an ASD lens and perhaps I'm attributing things to ASD that aren't anything to do with it.

He was never easy - a biter, a bolter, an escapologist from every buggy/bike seat, etc. He's much better at listening now but when he's absorbed (eg in a computer game, comic or lego) it's like he can't hear me, or he says, 'I can't help it.' But I know how much I hate to be pulled away from what I'm doing, so on one level his behaviour seems completely normal! But I have no idea what's normal after this week! He throws, slams doors, hits when he's angry and sometimes it feels like I'm dealing with a 3 year old again. He still tries to bite me sometimes when he's v excited. He got really stressed during half term about going back to school but his class teacher (who flagged up her concerns to the senco in the 1st place) has been great and he's a bit more settled now.

I spoke to my MIL about this and she wasn't remotely surprised about what Senco said. MIL's a retired GP, btw. She said that she's thought for a while that there's a massive disjuncture between ds2's intellect and his social/emotional abilities/intelligence. Her view - and I agree - is that we need to focus on how we can help this lovely little boy to manage some of the more difficult things he struggles with and that a dx might allow us to access help/understanding.

One thing I've realised this week is how flexible we try to be around ds2 - I don't mean giving in to him or giving him his own way, but not being too rigid around him.

The diary idea is brilliant, Ineedalife. Thanks. Will start it now. Feel a bit teary thinking how complete strangers have taken time out to reply. Thank you so much. I talked to a friend this week about this and she dismissed the whole thing and said don't be so ridiculous. She meant to reassure I think, but I suspect this will be a common reaction from people who don't spend a lot of time with him. DS1 has dyslexia and at one level I feel like an achingly middle class twit who's looking for a label to explain her other child's odd/bad behaviour. Having said that, it was the teacher and the senco who approached us, so I didn't go looking for this.

I suppose the point it that whether ds2 has aspergers or not, we need to help him find strategies to navigate his way through the world without unnecessary struggles.

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HotheadPaisan · 01/12/2012 18:47

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Ineedalife · 01/12/2012 18:48

Your MIL sounds great (a refreshing change on here)
She has obviously sat back and observed your ds2 but waited for you to go to her with your concerns.

Fwiw,getting a diagnosis for Dd3 has been very positive. We know now why she is who she is and it makes it much easier to live with. We use strategies to support us.

This board really is a good place to talk. Before my Dd3 was diagnosed it really was my only support.

You sound like a great mum, btw, with great insight into your son.

Good luckSmile

AttilaTheMeerkat · 01/12/2012 19:14

I would also keep a diary and seek a referral to a developmental paediatrician via your GP.

You are indeed fortunate that your son has a SENCO who has actually noticed something through her own personal experience.

I would also look into applying for a Statement for him from the LEA as secondary school is not that many years away now. If he is somewhere on the ASD spectrum, secondary school can be particularly hard going if his needs are not being met. Anxiety could well affect his ability to learn within a classroom setting.

harrietspy · 01/12/2012 19:19

can't tell you how grateful I am!

Yes, MIL is brilliant about things like this. I won't be talking to my own mum about this because she couldn't tolerate it when ed psych said ds1 had dyslexia and got really angry with me. (My db was very difficult - adopted after hugely traumatic early years, violent, addict, in and out of secure MH units, prison, as an adult etc - and I suspect she thinks I don't know I'm born as far as challenging children are concerned. She had no support from schools or anyone even though db had massive behavioural/psychological problems and his behaviour utterly terrorised and traumatized all of us. We still don't talk about it as a family. Madness!) TMI perhaps - I suppose I just mean that not everyone will understand and I don't really want to be defensive about something so important, so I'll just pick who I talk to carefully.

Thanks again for the reassurance. Smile

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harrietspy · 01/12/2012 19:22

Thanks Attila. I'm going to keep diary and see GP in new year I think.

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harrietspy · 20/12/2012 15:57

An update: the Senco at school is going to refer ds to the paediatrician directly. How brilliant is this? I was gearing myself up to have to convince the GP that there are issues that need addressing and I'm so relieved we don't have to do that.

On the downside, MIL told xFIL re her thoughts on DS and ASD and FIL thinks it's daft and, in ds's case, a middle class excuse for bad behaviour. Xmas Shock. I suspect this is a common reaction. Saddens me, though. He doesn't get that we didn't go looking for this. Ds's teacher brought it up and Senco wants to refer. We are not chasing a diagnosis nor making excuses!!! Anyway, my MIL is still being incredibly supportive and I think will be a voice of reason whatever the outcome of the assessment.

DS has been having really violent tantrums recently and getting more sensitive to noise, smell, touch - partly I'm sure because of the lack of routine at school and home as Christmas approaches. Whether ds has ASD or not we need support while we work out how to help him.

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Handywoman · 20/12/2012 16:14

That's brilliant, Harrietspy. Now you know the ball has started rolling. There is plenty of time for your family to adjust to new ideas about your ds, this is a long journey. Your Senco sounds brill.

Happy Xmas,
Handywoman xxx

harrietspy · 20/12/2012 16:31

Thank you! Xmas Smile

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mariammama · 21/12/2012 16:27

You're getting the diagnosis process going, and meantime home and school are handling your DS2 well. Personally, I always listen carefully to the knowledgable and politely ignore the less-well-informed. Sounds like your senco and MIL know their stuff, but your mum and FIL aren't quite there yet. Is FIL an engineer by any chance Wink?

FWIW, you mum is probably still scarred from having a traumatised child during the generation on which professionsls blamed everything on the mum (and if the birth mum was no longer on the scene, frequently happy to blame the adopted mum instead).

BackforGood · 21/12/2012 17:02

Glad to hear the school has referred. You are absolutely right - in one way it doesn't matter if it's Aspergers or not, your priority is to help him through the situations he finds difficult, but IME, it is a lot easier to get support if you can start the conversation by saying "He has...." {insert label}. The SENCo at his current school sounds fab, but she won't always be the SENCo you are dealing with. The great thing about a diagnosis, is, when everything is going well, nobody needs to know he's got it, but when he / you do need support, it's a LOT easier to access if you have a medical diagnosis, rather than people perceiving you as a fussy mother.

harrietspy · 21/12/2012 20:53

That's exactly my feeling, BackforGood.

Maria, FIL is retired GP! He can be amazingly supportive but also quite quick to form judgements and he changes his mind quick as lightning and forgets he ever held opposite view. He's a sweetie, but not the person to confide in about this.

MIL has read up some more on ASD in DSM 4 and is now less sure that DS meets the criteria. (Could I get any more abbreviations into that sentence?!)

Now I'm anxious that Senco, teacher and I have misread him entirely, that he doesn't have ASD and that his anxiety/explosive temper/intolerance for noise/smell/touch are the result of crap parenting...

I suppose whether or not he meets the criteria, he has social difficulties. If he doesn't have ASD I hope these will ease off as he grows. In the mean time I'll continue to read the book on raising aspergers' dc that the Senco lent me - because the stuff in there is relevant to my ds whether he's on the spectrum or not.

Thanks for the support! x

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BackforGood · 21/12/2012 22:45

A couple of books I recommend a lot, are
Martian in the Playground - Claire Sainsbury
and
Coping - a survival guide for people with Asperger Syndrome, Marc Segar, 1997 ..... this is a guide to social situations, written for teens I'd say, by a young man with Aspergers. Fabulous insight.

mariammama · 21/12/2012 23:09

Tell mil to look at draft DSM-v or else the oldfashioned icd10, which has a useful 'atypical autism' category. DSM-iv tends to drop way too many dc into a miscellaneous ASD-lite category called PDD-NOS

harrietspy · 22/12/2012 20:50

A nightmare at family celebrations today. Ds had a meltdown when everyone started singing carols and couldn't understand why people kept singing when he was crying. (Elderly relative: 'BEHAVE!') He also freaked out when uncle tipped him upside down for a joke, told his dg he didn't like his present, said the food was disgusting (much richer and more heavily flavoured than he's used to). It looks like appalling behaviour, but I genuinely think most of it is just that he's not coping...

Home now, thank goodness, but ds has been manic and has felt unreachable for most of the evening.

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