Mild ASD diagnosis at 13 - where do we go from here?

[MrsFlittersnoop]

How do we cope with this? He is not typical in many respects - no obsessive behaviour/conversation or stimming - V. bright academically - only probs are he can't read social situations at school and gets beaten up in the bogs on a regular basis. School Senco and SALT have provisionally disgnosed him as ASD. I spparently completely "face blind and can't rad expressionas or mnoitor body language. Lovely kid othersie - all mu adult friends think he is the bes knees - but he can;t relate to his peers./

We are waiting for NHS diagnosis and have arranged BIBIC assessement in Feb.

DS is V. paranoid about other kids approaching him. He only moved to this school 3 months ago and the school have been totally brilliant about helping him - giving him a time out card, encouraging him to go to library at lunchtime, letting him off games etc. DH is probably on the spectrum too (IT consultant, severley dyslexic, ADD) and has been very supportive.

I am dreading Xmas.

My Aged Mama has self- diagnosed as ASD after our conversaions about DS, (utterley weird and reclusive but benign old bat- , she is quite right! ) and we have also realised that my lovely gentle younger brother is almost certainly on the ASD spectrum (his DW is a Professor of IT and he is a SAHD who hates social interaction).

I have read everything going about ASD/ Aspergers. Tony Attwwod is my new Guru. I am a professional researcher, so I'm used to finding about about stuff very quickly.

DS doesn't fit a "conventional" ASD profile as as far as I can see, so all these books ike " Geeks Freaks and Aspergers" etc don't really fit with his situation. I don't mean to disrepect the book - but it doesn't seem to have any real relevance to our situation or my son IYSYIM.

DS's Dad is spending Xmas with us. DH, DS and I live with my 81 year old mother - we moved in 4 months ago - so are in a rather unconventional family situation. Ds's Dad is 60, and has just been made redundant after 30 years working for the same firm. So he is not in a Good Frame of Mind.

He is very resistant to any discussion about DS's ASD. Apparently, DS's problems are all my fault for being a crap parent. But Hell. The Apple don't fall far from the Tree.

So - here I am - attempting to be the perfect respectable 49 year old matron, about to micro-manage the perfect:

Extended Middle-aged Grown-up Blended Family Christmas.

Please can I just run away somewhere for the next few days?

A caravan on Canvey Island would be perfect.

Your boy sounds like mine, he's 15 and got his dx at 9. treating the situation as a research and development opportunity is an excellent approach. Mine learned social interactions a la David Attenborough, studying NT behaviour and being talked through the how and why and whats of the situations.
My OH is as Aspie as they come and so tends not to do much on the interacting and involved side. I'd not bother worrying about trying to include your Ds's dad at th moment, other than telling him about the dx.
The fact that school is working with you is going to be one of the best ways forwards, keep the dialogue going.

Goblinchild - thanks so much for replying!

Hate to sound a bit of a stalker, but I have been lurking for a while on the SEN threads and noticed you have an Aspie lad of a similar age to my DS and you've posted some extremely helpful and insightful stuff here! .

We are trying to deal with this as a "cultural" issue, and are also taking an anthropological approach. DS is very bright, but also horribly sensitive to being identified as "different", so we are very worried about how he will cope with a "diagnosis".

I suppose we are a somewhat eccenctric bunch as a family TBH, and we have already had many discussions with DS about the fact that many of his family and friends are non-NT.

I remember you commenting about parenting styles and how this can delay or confuse a diagnosis...

DH - my Ds's stepdad - is an IT wizz with a bonkers IQ, but also utterly dyslexic and v. differently wired - along with many of his friends and colleagues - some of whome are off the scale prize-winning mathematicians etc.

We are so fortunate with his school - they identified his probs. within 2 months of starting here and have been totally supportive.

DS is a lovely lad who is having to cope with awful crap at school.
But we are very aware that most of his problems are are because
he comes across as hostile and scared because - well, he is scared and therefore hostile, even though he admits the kids in his new school are much nicer than the last one (scary streetwise urban North London as opposed to safe MC Provincial).

I don't believe that home ED is the best way to go - but we will do that if we have to.

In the mean time, he's joined a church youth club and has acquired a totally devoted girlfriend, although he's utterly bewildered by the situation.

Strong silent Aspie types give out totally wrong signals to hormonal little 14 year old lasses!

This has all been a bit of a bombshell. We've suspected for the last 4 years that DS was on the spectrum, but perhaps because (to put it bluntly) DS is v. hyperlexic and we appear v. MC (sorry if this sounds awful) - ) we have had our concerns dismissed for years by everyone - GPs and schools.

I fel we may become best chums dear!
Ditto to the extended family of 'eccentrics' many of whom did well at Oxbridge and two of whom never left the comforting uni environment.
Give your boy time in his new place and the default setting of fear combined with rage will slowly adapt to a newer and kinder environment.
Each year at my Dss school has proved better and easier than the last, and now he's in Y10 and GCSE choices ave been made,it's better again.
I considered HE for a while, despite the fact I couldn't have given up work. It would have been evenings and weekends and holidays.

"Strong silent Aspie types give out totally wrong signals to hormonal little 14 year old lasses!"
Oh yes, had that one too with added yelling of 'For God's Sake woman. leave me alone'

Tell him the dx is a key to unlocking difficulties he's having, a way around and through stuff that's in his way. He already knows how hard the world is, but you are going to help him build a map of how to navigate successfully.
I'll be hanging around here, keeping an eye open for you. So keep posting.

Being around other eccentric, quirky and bright children has helped my DS aged 8 (who falls slightly below a full diagnosis of Asps but has loads of the traits). He (and his twin) go to an academically selective school FULL of very eccentric boys (and some girls too), who are way out beyond bright in some areas but way way far back in social interaction. My DS has three friends - two who I'm sure merit an Asps high-functioning diagnosis. They 'hang out' together, especially one of them all the time with DS and seem to spend a lot of playtimes walking around the grounds, discussing what most children might find weird.

DS is atypical, as he isn't v good at Maths but a whizz at anything involving words/ language. DS doesn't feel 'weird' because he's surrounded by other v 'individual' quirky children, all eccentric in their own ways, as well as a small majority of more ordinary (but bright) children.

Can your son's school help him by enabling /organsing some activities with other like-minded children, where there's a structured interest focus and less of the need to do what the other children are doing? Two of DSs friends for example are into astronomy and discuss this a lot. Maybe it's more difficult as your son is older than mine.

I've found it helpful really to see how DS sits on the ASPs continuum. It explains a lot about my older sister, who has some traits, hated eye contact/ physical contact, comes across as v unemotional and insensitive, yet hugely successful in her professional life...and my late father who often went ott socially and was inappropriate at times.

It's made me also appreciate much more my own eccentricities and be able to model daily, for my twins, that being different and atypical is lovely! . I actually much prefer unusual eccentric people, more and more, unlike when I was younger and just wanted to fit in. Spending lots of my life around equally eccentric people (Oxbridge etc) helped me to see how the world is full of fascinating and unusual people.

What interests me is how another huge genetic loading towards being tuned in to people psychologically (lots of us are in Psychiatry/ Psychology) has somehow counterbalanced the Asp.- pull in my DS and probably in myself too - and given us a strange mix of excellent social skills in SOME contexts - eg ones that are structured and/or we are leading - and hopeless ones in others. I expect it's the genetic mix and pull of different genes that can make many Asps children atypical in some ways but similar in others.

DS loves to 'lecture and question' adults - which goes down less well with more ordinary peers - but the grown-ups love it. But could your DS perhaps learn some specific skills that involve him running a group/ leading and interest/ activity etc etc, so that the context is one of being more in control and focused on an interest and less so on him, per se?

Small classes at school might help, small school....only Home-schooling if the advantages of ordinary school (learning to cope in the world out there with less eccentric people) are outweighed by the distress caused to him.

I think you're spot on to interest him in the anthropology/ study of human behviour thing, as being able to step back and observe and understand, then try to apply certain skills can work wonders and move you from a position of 'why don't I fit in?' to 'how amazingly fascinating and diverse our species is'.

"Strong silent Aspie types give out the wrong signals to hormonal 14 year old girl"

That made me laugh as i realised years ago that I was obviously destined to have Aspie children as I was ONLY ever attracted to that type when younger. I actually broke up with DH at one point when we were teens as I was fed up with his silences (he never asked me about myself and was rubbish at chat), DH has improved with age and I have learnt to appreciate him being a good listener.

Your son sounds lovely, my eleven year old starts high school next year and I am worried as he comes across as nervous and hostile with kids he doesn't know (but is brilliant when chatting to them when on his xBox live headset!).

Mrs Flittersnoop, you echo exactly what I am going through at present with my 13 yo dd. I'm also 49. My 22yo dd1 has Asperger's.

I believe we will get a dx early in the new year of asd for my dd2. she has "dyslexic tendencies" but her main problems are social interaction with her peers. This has been the case throughout her school life and in March this year the ed psych referred her to CAMHS. She gets a little help with literacy at school but as she is School Action Plus is not regarded as needing significant help. She has a high IQ but can't write and has reading and memory problems.
Recently the local ASD unit has started a support group at the school for children on the spectrum, with the focus being on helping with individual difficulties. The group talks about their fears and individual difficulties and swap/share methods and tips which may help the others. My dd really enjoys the group and knowing others with similar problems seems to be really helping her.
All of her friends over the years, bar one, have been on the spectrum or have had other special needs.

My DH, DD2's Dad, died 18 months ago after being ill for a year. Over the last three years I feel I have been to hell and back with everything that has happened. Hopefully if we get a dx we will get more help and the future may not look so bleak.

But my main worry is for her future. I've read about the outcomes for those with ASD and it doesn't look good.

Sorry for the long post, but this thread really struck a chord with me.

Thank you so much for all your replies!

Aged Mama made a joke today about a 50-something friend of ours who is suffering from Empty Nest Syndrome.

"I couldn't wait to tip you both out of the nest - We moved you two (DB and I) out before you were 19! I never experienced that sort of angst."

She gloated remarked.

Thud of apples not falling far from trees!

onadayliketoday, yup, you've been through hell and back. I hope and pray that the new Autism Act and Autism Strategy and the Lamb Report for children with SEN will make a difference for so many of our youngsters. I know what sort of hell it was growing up with no dx and no help and support, in a world that is so used to social excellence and competence. The DX helped me enormously.
In turn DS (17) has had a huge amount of support through school (excellent state primary, now private school who cope with him very well), and because I've been there, seen it, done it and got the proverbial t-shirt so could guide him. Boy, it's been hard work. But we got there. What the future holds for him we don't know - his mind is both brilliant in some things and completely non-brilliant in many others . But we can keep hoping...

Any advice on what to say to Senco about my DD's dx? DD was dxd at 4yo as asd, I was given some leaflets and told to read them, have never had any help since then. She's at MS secondary, really struggling, so am seeing (thankfully much nicer) SenCo on 6th Jan. Or what to ASK her??!!

So pleased you're seeing a decent SENCO soon. Schools are supposed to have access to top quality training materials on ASC now, so ask what they've got and what training the teaching staff are getting.
Is she on any sort of School Action status - I'm guessing not if she's not getting help. But how are they assessing her?
Have a search online for the new Lamb Report out about children who have any sort of SEN and the requirements that a school simply must let them reach their full potential.
What we found in the School From Hell up the road was that even though DS is bright in his own way, they took the view that he could fall down to the lowest group before they would help him, as that was 'reasonable'. Hell no. If a child is bright enough to be in the top X percent of the class for some/all topics, they have to be helped to achieve that. He'll always struggle with some things, but his new school helped him SO much and instead of failing loads, we battled like mad to get help for him and he got 9 GCSEs in the end though don't ask about french or science for that matter. Or what happened in the Drama paper...
Every child needs to be able to enjoy their day, learn and do their best - whatever that level of 'best' is.

For ASC it means a really structured day, materials we can actually read, (since many of us have difficulty with some concepts and understanding complex wording if there are no illustrations or other ways to learn it). And somewhere quiet to be when we need it. Lack of flickering lighting helps, and low background noise (is she sensitive to sounds, textures, lighting etc - not all of us are/not all of us realise we are when we're young but it can make a heck of a difference). Definitely needs to be on an IEP of some kind, I'd say. www.ipsea.org.uk/ is a very good charity for info, and the National Autistic Society helpline is good too.

"he got 9 GCSEs in the end grin though don't ask about french hmm or science for that matter. Or what happened in the Drama paper...
Every child needs to be able to enjoy their day, learn and do their best - whatever that level of 'best' is."

Agree completely. In my son's school everyone takes a MFL at GCSE if they are able to, and DS is in top sets. But can't cope with languages. Not vocabulary, speaking, memory. The whole thing was a disaster area and very stressful.
So they thought about it, we discussed possibilities and he dropped both German and French with the school's blessing.
Now he's online for 10 GCSEs with good grades, and a very happy attitude because he feels that his needs were considered, and his part is now to work his tail off at the remaining subjects.

Yup re the languages thing. I have aspie friends who speak 7 languages fluently and can learn a new one in a few days, but my brain only thinks in pictures and speaks English as a second language anyway. So trying to teach it which pictures relate to which foreign words is hopeless. It just can't do it.

His school have been very good at working with what they have, what is hard-wired and what can be changed or improved. It's a mainstream secondary with over 1,400 pupils an amazing SENCO and the majority of the teachers are very willing to listen and learn.
Except PE.

I also have a DS (only 9 though) who has a dx of AS but is untypical too. Most of the books I've read on AS don't sound anything like him.

I have, however, had major concerns about his motor skills too (he has OT therapy at school but no other help) and have wondered about dyspraxia. There is a huge overlap with ASD spectrum but with the added twist of terrible motor skills. I got a book for Christmas called Caged in Chaos which does sound exactly like my DS. It is a bit of revelation actually to find that he fits somewhere. It is written by a 16 yo girl and tells what it is like to be a teenager with dyspraxia/DCD.

Just thinking that if your DS doesn't sound typical AS then it may be that it isn't the right label for him after all. I do tend to think that everybody gives a dx of AS because people have heard of it and it is easy and the hospital can wipe their hands of you and leave you to get on with it (round here anyway). A dx of DCD would require more input ime.

But it all depends if you think your DS has motor skills issues as well I suppose.

Hope you survived Christmas OK.

DD has been on SA+ since School Nursery (8 ruddy years now!), and has only just progressed past p-scales in maths in the last 3 months since being at Secondary. She is getting some help with the academic side of things, but none with the 'social' side of things and/or organisational skills (organisational skills....what organisational skills???). I forgot about her dyspraxia, she has so many dxs it reads like a ruddy medical dictionary, but still my PCT does bugger all nothing to help me. Maybe I'll get somewhere now the school is taking some notice of me. Such a breath of fresh air compared to her primary.

Hi to everyone - hope you have all had a chilled Yuletide thang!

Sorry to have not come back and resplied to everyone sooner, but have had a chaotic Xmas.

Oneday - I'm so sorry to hear about your DH. Can't imagine how hard this must be to bear without a supportive family around you. How is your DD1 coping now?

Wigglybeezer - God - my boyfriends were all fucking weird!

Solo - my DS is a words/language person too, and he struggles with maths. I feel we lost sight of his problems when younger because he has no maths/logic facility, unlike most of the ASD blokes in the family. So we assumed he was NT.

May I ask - how did you discover how to "see how DS sits on the ASPs continuum"?. We are constantly Aspie-in-the-Family spotting. What DX process did you go through?

Goblinchild - I recall a fabulous description of yours re. stress- related reactions - the Hitter and Roarer, as opposed to the Flapper and Wailer.

I have an FW. And he gets tearful - bursts into floods when stressed, which is of course instant social death in a Ruggery-Buggery all-boys school. Don't really know how to help him with this. DS is like an emotional 10 year old girl TBH.

I did make a passing reference regarding the Mens Sana school ethos to the SECNO, who laughed, and said if DS can get 8 A*s at GSCE provided he's let off P.E., then as far as the school is concerned he can spend the next 2 years reading Adrian Mole in the SENCO office whilst the other kids are being frozen to death and getting their goolies kicked off.

Fair does.

W've found that MFL (French and Italian) work quite well for DS - reasonably rigid and predictable structure, and he seems to be able to decode written language within rules.

Can't actually SPEAK any of these languages of course.... apparently the ability to do so would be a guarantee of terminal Gayness and therefore deserving of Head/Bog/Flush scenario.....

Hi You asked how I discovered how DS sits on Asps continuum. Well, he made no eye contact from a v young age and he has a fraternal twin who was developing v differently - more like most children. So there was that constant comparison possible. I got him assessed in the NHS around age 2, because of lack of eye contact largely and they said he wasn't on the ASD continuum but I still noticed he was different from his twin and other peers.

I had him assessed again in the NHS at age 2.75, when he'd just been turned down for a place at an academically selective pre-school, whilst his twin was accepted (I didn't send other DS there) and had been told he was "developmentally subnormal", when it came to language related stuff - like - "put the teddy behind the car but in front of the crayon". Of course, as it turned out, he was actually super-advanced in language but didn't show that at that assessment.

The NHS assessment was inconclusive because they said DS had non-specific social/communication difficulties, according to me but they hadn't seen enough to worry then at assessment. It was difficult because I knew two out of the three assessors - one professionally as a colleague and the other (the SW) as our next door neighbour who was in dispute with us, complaining about the twins' ordinary childhood 'noise' when she and boyfriend needed a lie in etc! I 'banned' her from the room/ assessment! I didn't feel I'd got the best out of the assessment because of the situation with the assessors.

DS then had speech therapy around age 5 to 6 and the therapist flagged up problems with pragmatic language and started to say stuff about 'special needs'. I freaked! She told me he'd never get into any of the local fee-paying schools, where I was planning to send him and twin.

So I then paid for a private assessment for Asperger's from a local expert, who saw DS when he was 6, over several interviews/ assessments including IQ tests, interviewing/ questioning me/ standard ASD assessments etc and a school visit.

It was her assessment that confirmed DS had several traits of Asps but didn't quite fulfill the diagnostic criteria because of being 'too able' socially compared to someone who would meet the criteria - although he was also much 'worse' than 'normal'. In the end, we both concluded that he was on the last degrees of 'normal' or, perhaps, given a different interview day/ psychologist assessing/ my mood and responses to questions, might be just at the very lowest end of a diagnosis of Asps.

She suggested I read up on Asps because a lot of stuff was likely to apply to him and suggested that actually the most academic fee-paying school locally would be the best place for him, given IQ.

He and twin did the entrance exam for that at age 6 and both got in with only 'one point between them' and I didn't tell the school about his difficulties.

As it turned out, it's his twin who's had the most problems - because of attentional problems, whereas Asps-like DS has settled in well is doing well academically and has those 3 friends mentioned in my last post, who are all quirky - but then loads of the other children are too.

So I've sort of got here in a roundabout way and en route, realised that it's quite hard to diagnose Asps. and not an 'absolute' thing but often an opinion and also that quirky traits and development can, at one time, suggest a child is disabled and at another time, gifted

MrsFlittersnoop - I notice you said your DS doesn't cope well with maths. As I said in my previous post my DS has, I think, dyspraxia/DCD (despite his AS dx) and it is very common for these children not to find maths easy. They have difficulty with the organisation required. English and the language-y type subjects don't require them to be methodical so they normally do better.

I did read recently that Einstein didn't know his times tables either strangely. He was cited in the dyspraxia book I linked to as having been somebody with DCD. He is always cited as a being an aspie in everything I have read in the past but now it seem also dyspraxic/DCD too. I think it is just another indication the overlap.

I also notice that he doesn't do well in PE. How is his handwriting and how are his organisational skills?

Hi Niecie, when the SENCO first raised her concerns with us she specifically stated they were thinking Dyspraxia/ASD. DS can't ride a bike, do up his school tie, use a knife and fork neatly etc. He finds manual craft-related activities impossible without clear step-by-step verbal instructions (he has some difficulties processing verbal information), although he's fine with written ones. You can imagine what his DT results are like at school!

DS has always struggled with maths compared to other subjects, but after several years of weekly private tuition he is consistently working at around level 6b which is pretty respectable for year 9. One of is tutors said he was the most "right-brain dominant" child that she could remember teaching. He is a strong visual learner.

DS's handwriting is just about legible but very messy and his work presentation is dreadful. School have suggested that he produces all his homework on a computer and will let him use a laptop for exams in a quiet room away from the exam hall.

Solo - the gifted/disabled thing is so confusing isn't it! At least DS is accustomed to dyslexic DH, who finds reading a huge chore and cannot spell at all (I deal with all his business correspondence), but he can calculate(??) algorithms in his sleep.

Sounds like your DS is in the same black hole as mine where no particular dx seems appropriate and you just have to find the best fit. I don't think we have although at the moment it doesn't make much difference as the school is being great and dealing with his OT. The ASD is forgotten though but what can they do for a child who is coping well academically and is really only a 'problem' in that he isn't very popular and doesn't fit in with his peers?

You said in your OP you don't have a formal dx - are you going to see if you can get one? Have you been to your GP? Neither the SENCO nor the SALT can dx AS or dyspraxia for that matter. They can only give an opinion.

How was your Christmas though apart from being chaotic? Was it OK and chaotic or horrible and chaotic?

We have an appointment to see a consultant paediatrician next month, regarding his social and communication difficulties. We have also booked a 2 day BIBIC assessment in Feb.

This is is a result of a Senco referral from his new school. He started there 3 months ago, age 13 (year 9), when we moved house.

Just wanted to add - Ds has had 2 lengthy SALT asessments in the first 2 months of joining his new school, which resulted in the NHS referral. School have been totally supportive and have actually initiated these procedures.

He will not get a statement. Our LEA will only statement kids who have learning difficulties re. accessing the National Curriculum. I was told DS would have to be working at level 2 (at age 13) before he would be statemented. But the LEA give money to each school, who then allocate funds according to their own criteria.

Is that bollocks?

BANES BTW - for any local lasses!

Xmas was OK and chaotic BTW!

Really nice actually. Odd and weird/Boho, but nice.

Aged Mama loved all the drunken old hippies young folk (age 45-60) staying around - (this includes most or our extended family members these days), as well as the horrible brats interesting and challenging Aspie 13 year-old boys.

If anyone ever mentions Warhammer in my hearing again, I swear I'll do time for my crime.

House stinks of glue.

We're not quite finished yet!

"If anyone ever mentions Warhammer in my hearing again, I swear I'll do time for my crime."

Do you remember gay boxes from decades ago? Narrow shelving made of two interlocking squares for displaying knick-knacks?
DS inherited his Great-Grandmother's collection of boxes when she died, donated the knick-knacks and now they are full of Elven warriors and Vampire Counts and the like. Hundreds of them. She'd have been delighted!

Hi MrsFlittersnoop - sadly it isn't bollocks. Your DS probably won't get a statement. I think, as you were told, you have to be struggling academically to get one of those. It's not a problem so long as the school are supportive and do what they can - sounds like your DS's school is OK.

I just reread my last post by the way. It sounded a bit like the Spanish inquisition. Sorry.

I wasn't saying either way that you should get a dx. There are pros and cons for these things and a proper label, especially for children who are just about coping, albeit having trouble. I think in the end I just wanted to know there was reason for my DS's troubles but it hasn't really helped as I don't think he has the right label!!

Your Christmas sounded OK even with the Warhammer - we stay away from those game shops as that is just the sort of thing my DS would love, even if he hadn't a hope of painting them properly. Actually it sounds interesting in your house. I bet ours was louder though, unless your DS doesn't come with a volume control either!! I have two boys, both going mad over the Wii, and DS1 (my aspie) reporting everything he does at least twice v. v. loudly. He has to go on a school trip next week, away 4 nights. I shall miss him but I am looking forward to the peace of just one small relatively quiet NT boy!

Happy New Year!