Any parents with 'borderline' ASD or significant traits - what made you act on it?

[auntevil]

Just seen a friend whose DS has dx aspirers. She knows my DS2 from various places as DS1 is dx dyspraxia with AS traits and we often attend the same groups. Although we have only ever talked about DS1 in regards to schools, dx etc, today she inferred that DS2 was AS also.
Now i'm not overly surprised, as i've often had little doubts over small things. I did the Cambridge test (?) online and he scored high enough to warrant 'investigation'. But i do have doubts as to how much is just 'him' and his personality. In fact i discussed with another friend this week, who is having her second child dx on the spectrum, what she thought. We kind of left it at how does it affect his life? I'm not really sure how.
He's very into rules - which is probably why school is not too much of an issue. He gets very distressed if others do not follow the rules, and at nearly 6, still bursts into tears if someone doesn't follow the rules. He is often in his own little world with his own imagination that doesn't involve others. He will play with others, but loses interest if it doesn't follow his beloved rules. But he doesn't seek out friends and appears very self sufficient.
I suppose i'm asking at what point did you make some kind of intervention, or did you, with one of your DCs that you were a bit wavering on. Has it benefitted them? Has anyone left their DCs with traits and had positive outcomes?

sorry, aspergers not predictive gibberish.

My DS (5.10 years old) sounds like your DS1.

He has just got the the dyspraxia DX and and I am going to be getting him assessed for ASD as there are definitely traits. I figure that he will get more understanding at school and I can access more services and support with an ASD DX if he does prove to have it.

My DS was diagnosed with Aspergers about 6 months ago. He is now 10. The whole impetus for the investigations and diagnosis came from his school and the Occupational therapist he was initially referred to. His behaviour as a small child was much as you describe but we thought it was mainly his personality and it did not seem to affect his quality of life. He was very happy. However, the turning point came when he went to school and struggled with making new friends and focussing on school work, particularly writing. The school encouraged me to refer him for OT which we did and then re-referred him a year later as his behaviour was getting worse (a few minor incidents of punching/fighting) and his hand writing was not progressing. The second OT asked if I'd mind if she referred him to the community paediatrician, mainly because he was pretending to be a soldier a lot of the time. The paediatrician took about 4 - 6 months to come up with a formal diagnosis of Aspergers.
The main benefit for us has been that the school are much better at handling him and making provision for his difficulties. He is not being labelled as naughty any more and they deal with him much more sympathetically. I also can ask for help for him more easily iyswim. As he gets older, he is becoming much more self aware and having the diagnosis helps him to understand why he finds some things so much more difficult than other people.
The diagnosis has also made me treat him differently as I realise now how difficult ordinary things can be for him and how much extra effort he has to make just to fit in with us. I find I am much more patient with him.

I try to think of his Aspergers as being part of his personality (rather than a condition) and as such it can have positive and negative points.

I don't know if any of the above is of any help but I suppose my main point is that your son is still quite young and things will become clearer as he gets older and has to face different challenges.

Thank you hebe and Ben. i totally go with the dx helping get the right support at school. Like you hebe, my DS hasn't encountered any continued or escalating incidents that have made the teacher raise any concerns. I trust this teacher as she had DS1 as well and is very understanding and supportive.
Can i ask you a personal question hebe? Hindsight - that wonderful thing - if you could turn back the clock, would you have sought out support earlier, or was it just a natural progression of events and you wouldn't have done anything any differently?

I am not sure because there was a fair amount of ambivalence on my part during the whole process. I didn't want to believe there was anything 'wrong' with my beautiful son. I still worry that I am not, and was not, pro-active enough for him. Perhaps it would have been better to have sought help earlier but I just didn't know what type of help we needed. If anything I thought my ds had some form of adhd rather than Aspergers so it was quite a surprise when he was so quickly diagnosed.

If you are concerned though and you have some inkling that he may have Aspergers, then I suppose the earlier the better.

DD1 wasn't dxed with AS til age 12 in response to not coping with transition to high school. AS had never been raised in our family before this.

DD2 was 6 at the time, now 8 and just about to get dx of AS too (probably).

I wouldn't have recognised DD2's trait if DD1 had been NT as they are both typical AS girls and hide their symptoms.

Now I realised what is happening with DD2 I know that she has more difficulties than DD1 and will really struggle with the next school transition so we have pushed for a dx.

DD1's dx has been a gift for DD2 because hopefully she won't suffer the mental health issues DD1 had from being undiagnosed for so many years.

I have the queen of borderline here.

Dd3 just missed out on a dyspraxia dx and has borderline social communication skills. I believe she proabably has AS but as she has developed lots of masking/coping strategies at school I am not sure if she will get a dx despite being on the assessment train for 2 years.

She is just about to be referred to tier 3 at CAMHS but who knows what the pysciatrist[sp] will make of her.

We have never had support from school and have just moved her to another more inclusive/clued up school.

FWIW I think Dd3 needs dx ing because alot of people don't get her and I am worred that she will get swamped by people not getting her in secondary school, she is in year 3 now so not far away.

Sorry if thats no help .

My DS2 has HF ASD (DX at 3 and quite obvious) and I'm sure DS3 (8) is on the spectrum. He used to collect 4 of each teletubby colour of everything, eg 4 crayons, were teletubby crayons, 4 cars, teletubby cars. He is hyperlexic, could read at 3 (without teaching. He was 3rd child with SN big bro so no time to teach him!) he is very obsessional, currently super Mario consoles and games of the past! Only recently started playing with peers (quirky boys themselves) He cuddles people inappropriately, teachers etc.

I haven't looked into a DX as I personally don't think it would help him. He isn't particularly anxious and apart from terrible handwriting he's quite bright. I will keep an eye on it and review it if things change and he has difficulties at school or at home.

Just thought you'd like a different perspective.

I have to say that I found your OP, VERY hard to read. I mean the bit about it being personality.
when you start to really really read on it, you realise it isn't just personality.
I came from the other direction. I always knew there was something wierd/wrong/something/something/something, abiut ds1(7), but I couldn't put my finger on it.
And he didn't tick enough of the boxes to get an AS diagnosis. But she did say, some of his traits were very extreme. particulalry theory of mind and lack of empathy.
But school insist nothing is wrong. becasue he does so well there academically. not to worry that he cries, sobs, wishes he was dead, and is being bullied then !!

I am struggling to understand how you could consider leaving it ?

I think it depends on how distressed and anxious he gets and how often. If it's affecting his self esteem and mental health, then no argument. If he's just a bit eccentric but generally happy, harder call.

Knowing what I do about intervention my own opinion is that even for very severely affected children much of the intervention is not good quality so i doubt a very mild child would find much out there for them. for eg help with social skills etc Teachers don't get any training in how to teach social skills anyway so even if he gets a dx what are they going to do about it? Its unlikely he would merit help above school action or action plus and you don't need a dx to access that.

If I were in your shoes I would probably talk to the school and say you think he is borderline, that you are not sure you want to pursue a dx now and highlight the issues where he might need extra help - and then i would read up myself or if i could afford it buy in some private advice eg someone experienced with social skills for very HF children like an ABA consultant or psych or autism consultant.

Our ABA staff do a great job at teaching social skills eg DS3 current target is to develop social interest in peers (we have succeeded in teaching it with adults and he is now much more social with adults). They do it by pairing fun activities DS likes with peers and he also has a reward chart and if he shows any interest in peers gets lots of tokens. It seems odd to think you can teach a child to be interested in others and want to play with others but you can. So that would be the aspect I would want to work on, but i don't know if you would find anyone through the State provision at primary level who would come in and do that. The social skills groups I have seen LA autism teachers and SALT run have been pretty poor and don't really address the lack of motivation to be social.

Also LA approaches seem to involve just taking all the quirky kids out of class once a week and doing 'social skills' whereas really you want to be using the very social children as models and to be effective you need to train the peers a bit as well and do it daily as part of a systematic programme. But you could get someone to teach the school that and ask them to allocate a TA to do 15-20 mins a day or run an activity at break time. Although you need all the staff to be rewarding any social interest in others throughout the day. Really encouraging the behaviour you want to see more of. So you could do with someone to set up a social skills reward based programme

I think if he stays quite socially isolated then that will be potentially a mental health risk later in life, so I would be worried at not addressing that.

The school should be prepared to run a lego club or similar at lunchtime for children who play alone and need something more structured.

There should be a LA autism team but often they wont come in without a dx and mine was useless anyway and certainly would have done very little for a child with mild problems.

If the school don't want to do anything you could maybe get an autism consultant / ABA to train you to do more effective 'play dates' at home so he is getting practice. For my DS he has to be rewarded for playing with peers at this point, but then once he gets some motivation and interest it should become more natural - thats the way it has worked with adults anyway. Initially it was very much 'therapy' and he was expected to join in to win tokens but now he spontaneously requests we play him so its become more natural but we had to build the interest over several months and build up the amount of time slowly. He also does lots of practice with turn taking games, how to respond to peers / situations etc. in very structured situations. You can 'coach' your DS how to cope with the rules issue - a bit like social stories but role playing it with an adult coach first and then a peer eg get the peer deliberately to break the rules and prompting / rewarding appropriate behaviour - then hopefully he will learn the appropriate way to respond.

The needs you describe are a small part of the ABA programmes we do so I would think the financial outlay may not be that much. Really you are just looking at a few small programmes which you and school could be left to run with oversight.

I do also know a girl whose parents have chosen not to get a dx and she does ok but they do in effect treat her like she is AS and read up loads. The Mum has also been on an ABA course and lots of conferences etc

I think the idea that social interest /understanding NT social rules will just happen is unlikely, you probably will need to specifically teach it. So I would not do nothing, but I wouldn't expect to find the answer through dx / public sector either.

The NAS do run a course called socialeyes for teachers on social skills i think but i have no idea if its any good.

I think Agnes you've probably hit the nail on the head with
"So I would not do nothing, but I wouldn't expect to find the answer through dx / public sector either."
I don't really know what i would ask for help with.
He does have a couple of friends, but they too are quirky in nature. They are also quiet, sit on the sidelines and watch - but they do seem to have a genuine rapport and see each other outside of school. My DS does get included in the boys games as he is physically very capable - but he is chosen for his abilities, not as a friend. He is rarely invited to parties by classmates, but then neither are his quiet friends.
Secondary school scares me rigid for all 3 of my DS. They all have issues (medical) that would make them prime for bullying. I do think that the transition highlights all the nurturing environment of primary and being thrown to the lions at secondary.
Oblomov - i started at the completely opposite journey from you. After DS1, DS2 seemed very NT, physically in particular. His personality is that of my DH. DH is that fine line between being male and being autistic! He hates vacuous communication, has a small circle of close friends and is happy with that and doesn't seek out new social environments. He is a rules man whose glass is often half empty. He is naturally shy, but quite an authority in his field and is often asked to speak on his field of expertise. He too has a temper when things are not as they should be - but usually makes me sort it out! I have always assumed, from speaking to MIL, that DS2 was following a similar route, but some aspects are now even more full on than his dad. My DH does have a distinct lack of empathy too - but it helps him in his job to not have his judgement clouded.
The slight name calling that has gone on is due to his soiling at school - for which there is a physical cause - for which he is having ongoing treatment. It was nipped in the bud at school. He has never suggested that he is not content with his life - and loves going to school. It's mainly these emotional outbursts at seemingly trivial events that worry me socially. School are aware of this as i'm usually greeted with 'we've had a bit of a weepy one today' or 'there were a few tears during....' . If I thought he was unhappy at school i would be on their case yesterday, but he seems very happy there - and loves his teacher too.
Perhaps a private route for the rules adherence and fixation might be best , rather than a hurdle of different organisations who are unlikely to be very supportive for a borderline case.

I hope you don't mind me gatecrashing this post, but I would really appreciate some advice from people who might understand my dilemma - and you sound as if you could help! :)

My 6 year old son is a lovely, bright, chatty and outwardly sociable little boy. But since he started school it has become increasingly clear that he is 'different' from the other children. He is totally obsessed with dinosaurs (for 3 years so far) and Ancient Egypt (1 year so far) - he would talk about them all day if he could. He also has less long-lasting obsessions (such as collecting and organising Match Attacks cards for a few months last year). Whenever we go on a bus he sits next to someone and talks to them about his latest craze. He is totally oblivious to the fact that they are clearly bored or don't have a clue what he's on about (he usually just starts talking without giving them any context, e.g. "I've been playing Pharaoh's Quest..." and assumes that they know what he's talking about.) He has been like this since he was a toddler, with the result that he has a lot of middle-aged and elderly female fans in our village, who think that he's just an over-enthusiastic, sweet little kid. Younger children also seem to adore him ? he had six toddlers running around after him at a softplay centre last week, all pretending to be Egyptian mummies! But children of his own age don't appreciate being talked at in this way. He's never interested in what they say - he always turns the conversation back to his own interests. He doesn?t seem to understand that other people have different interests which they might like to talk about. If someone doesn?t want to play his game his way, he loses interest and wanders off to play it on his own. Usually he gets over-excited and talks far too loudly without realising it, although he's more than capable of playing quietly on his own for hours if needs be. He?s desperate for friends, and because he is so uninhibited about talking to people he makes acquaintances very easily. But as he gets older, he just stands out as being more odd to his peers, and he doesn?t have any good friends. He hardly ever gets invited to parties or to people?s houses. He seems quite naive about people - last year we found out from a dinner lady that he was being teased and physically bullied every day by three boys in his class, but he still thought they were his friends, so he kept ?going back for more?.

He cries very easily, often over the most bizarre-seeming things. (Yesterday he cried because he didn?t know what to write in his new notebook.) He is a truly terrible loser ? he cries whenever he is ?out? of a game or doesn't come first at something. He is scared of trying new things in case he can?t do them (e.g. he wouldn?t dance at a disco last week, crying because he ?couldn?t do it?. No amount of encouragement or offers to teach him would get him to try it.) He cries if he thinks someone else has cheated (whilst being perfectly happy to cheat himself). He tries to change the rules of any game he?s playing to make sure he wins, (e.g. if he throws a five when he wanted a six, he'll move six places anyway and say it's a new rule). He often cries at loud, unexpected noises and sits with his hands over his ears.

He has had problems with concentration and sitting still since he started at school. He finds it especially hard to concentrate on things that don?t interest him, but he can focus for a long time with great intensity if the subject grabs him. He has poor eye contact - he doesn't seem to be listening a lot of the time, although it usually transpires afterwards that he was. He blurts out answers to questions without putting his hand up, fidgets, has trouble queuing up, and interrupts people. As a result he has built up a reputation at school for being naughty. Since he started in Year 2, the problems have escalated into proper ?bad behaviour? beyond just disrupting the class. His teachers tell us that he has a really hard time coping with change, e.g. different teachers, changing activities etc. We know (courtesy of the dinner lady again) that other children have tried to get him into trouble for things he hasn?t done, and it seems that he now has enough of a reputation for the teachers to take the other children?s word for it. This is showing in more tantrums at school, he?s more frustrated and has started to lash out physically at the other children. He never did this before, and has never done so out of school. He is now literally tearing out his hair (we had to have his head shaved to stop him from doing it) and chewing on his toenails to the point where he got an infection. His self-esteem is at rock-bottom - he?s so unhappy. He?s always saying that he hates himself or that he?s boring or stupid. He?s not at all ? it breaks my heart to hear him say that. :(

Anyway, the upshot is that we went to see a paediatrician who talked to us for 20 minutes (if that), barely spoke to our son, and then announced, on the basis that we had filled in a questionnaire that ruled out severe autism, that he had moderate to severe ADHD. We asked if our son could be referred to an Ed. Psych. for further assessment and he said no, unless we went privately. He recommended medication. We came out feeling, ?Was that it?!? We have since spoken to his class teacher who said that she does not think it?s ADHD but an ASD, possibly Asperger?s. The Headteacher & SENCO at the school has said the same thing, and mentioned Semantic Pragmatic Disorder. A SEN specialist was also invited into the school to discuss our son (she didn?t meet him) but she also thought it sounded like an ASD. Now we don?t know what to think.

So, at the end of that ridiculously long essay, here?s my question? in your opinion, do my son?s symptoms sound like an ASD or ADHD? Or both?! Should I badger the paediatrician for a more in-depth assessment (given that professional people who have known my son for years do not agree with his diagnosis) or should I just believe him because he's the 'expert' and I don't want to annoy him and damage my son?s chances of getting the help he needs? My son is changing schools in September and I?m really worried that, without a proper diagnosis, the new school will not be as sympathetic or understanding of his needs as they perhaps should be. And then he will end up unhappy and misunderstood and tearing his hair out all over again. :(

Thanks for reading and for any light you can shed on this for me ? sorry it was so long-winded!

We aren't able to DX your DS but from your list of concerns and the fact that the paed came to a decision in 20 mins, I think you have good cause to ask for a second opinion. Make sure it is from a paed experienced in developmental disorders such as ASD, as some community paeds are not.

Sounds much more like ASD than ADHD from your description, but I'm no expert, just a mum of a DS with ASD. Get back to your GP and make a fuss. We are all entitled to a second opinion.

Also, you'll get lots more responses it you start your own thread.

Ok, few random thoughts - haven't long woken up from a long nap after chemo this week!

I'm on the autism spectrum and work in this field helping others to understand people like me. At school (many years ago) I was that quiet child with almost no friends/never invited to parties/was terrified of parties anyway. I coped with structured rule-based things, but totally lacked the ability to start and maintain sensible conversations or work out what was or wasn't a friend. Even now I can struggle.

I would say it's always worth a proper professional investigation and opinion if there are concerns. At the least, it helps parents to learn more about their child and learn what works for them and what doesn't. At best, there may be services of some sort that can help with social skills etc in ways we can understand.

Living in a world that feels, looks and sounds so very different to the world that others experience gives us very unique insights and very unique challenges. Ours is a fascinating life, but one we struggle to explain to others well enough.

Our behaviour can so often come across as rude and thoughtless when we don't mean it to be. Our fear of making mistakes or encountering situations which are unpredictable is so often absolutely overwhelming, and a parent who can help us predict what's ahead and what will happen is invaluable.

Hope it's all going as well as it can, Amberlight. (((hugs)))

(yup, going really well thanks - shrunk the bloomin thing 73% already and they've found some wonder drug I can go on longer term that should mean things have gotten very hopeful thanks . Only two years of treatment to go )

(That's good news. I hope all the positive vibes coming your way are helping.)

Thank you, EllenJane. Maybe I will start a new thread then!

It sounds alot more like aspergers than ADHD. He should really have a multi team assessment. However in some areas mine included it can be hard to access diagnosis services for older children. Look on the NAS website. You can ask your GP to refer you to a secondary centre eg Lorna wing or Elizabeth newsam the NAS will tell you if any others for a proper assessment. The tearing out hair is typical of anxiety often associated with asd. It's self harming behaviour and the gp can refer to camhs for advice/support.

Try and get hold of a Tony Attwood book about aspergers and see if symptoms fit. you can borrow books free from cerebra.

The school can put strategies in place without a diagnosis. There are also private diagnosis and treatment options out there.

You need to quite clear with the school he is not naughty and that you expect understanding and support. There is info for schools called idp and also autism education trust has lots of info for teachers on website. You can ask for your child to be put on school action for sen and ask for an iep to address eg issues round change and transition, a carefully planned transition to next school etc.

Thank you for that, Agnes - I really appreciate your input. Funnily enough I got Tony Attwood's Complete Guide to Asperger's Syndrome out of the library on Friday. I spent all Friday night and Saturday poring over it and sticking in post-it notes every time I recognised a trait - the book is now almost twice as fat as it was when I started reading, and I am almost 100% convinced that my son has Asperger's. Suddenly things are making sense - even things that we always just put down to lovable quirks and would never have thought to mention to the doctor have turned out to be possible symptoms! Thank goodness for that book - I am going to wave it in the paediatrician's face, jam-packed with post-it notes, and ask if he still doesn't think my son needs further assessment!

Thanks again - I will follow up some of your suggestions. x