Anyone suspected their child had Asperger's or autism and it's turned out not to be?

[Mouth]

Hi - my DS (nearly 5) is a bit of an enigma. I think he may be borderline Asperger's but his dad thinks I'm mad. Most family members think I'm mad. His nursery (although he has just started school) were mixed in opinion - the manager agreed with me he might be borderline but his key worker thought he was fine, just shy at times and stubborn at times. I have had an initial appointment with a comm paed and we have a follow-up one in a few months. With the start of school, I am obviously watching him carefully to see if/how he fits in. So far, ok, shy, not interested in making friends but is not upset to go there. I feel a bit like I'm going mad and sometimes I wonder if I'm over-analysing... anyone else been in this situation and it has turned out the child is just a late developer?

DS has a Dx of ASD which has been fantastically helpful in accessing the support he needs in school and giving him the space he needs from well meaning but unhelpful adults who want to change or 'improve him'!

However DH has just discovered he has a brain abnormality that is often misdiagnosed as ASD. It is in some cases genetic so perhaps DS has it to.

That's interesting, hope. Same thing happened to a friend of mine who has two sons. The eldest was dx asd, and three years later was found to have a brain condition that appears clinically v similar, but is not asd. It was only found by accident as the MRI was for something else entirely. Their family is also looking into genetic brain conditions now.

Yes, I've had this situation. DS has had 5yrs of various healthcare professionals coming in and out of his life (GP, Ed Psych, OT, Paed, CAHMS, SALT etc) and no diagnosis. He has always struggled socially, always needed learning support at school, and in the past I have been asked whether he has learning difficulties, and also asked (by someone who knows the signs) whether he is autistic. He came up borderline on his ASD assessment and tbh I really don't know where to go from here, although I will say that a few of his symptoms (eg obsessions and compulsions) have eased somewhat over time. I feel that given it has been so long and that he has so many professionals involved, if there was a diagnosis to be given we would have got it by now. So to my mind it's 'just the way he is' ie if there is a list of boxes an 'average' child ticks, then my ds ticks fewer than half of them.

IMO the diagnosis 'thing' is most important wrt school and any learning support your ds might need. If it turns out that learning support is necessary a diagnosis will help you secure that, otherwise it is easy for the child to slip under the radar, or for the school to argue that they don't have the funding or staff to provide support. With a diagnosis and subsequent statement they are bound by law to do so.

Also, if there are any behavioural problems a diagnosis would help these be addressed properly. My ds had a terrible time in yrs 1 and 2 being labelled the naughty child, he was treated really poorly by the then headteacher (now thankfully left) and I was at a loss myself, others probably know the feeling you get when staff and parents think it's somehow your fault or it's something you can control but just aren't bothering to. I really wish I'd made an official complaint at the time. Anyway that's by the by, probably, hopefully you won't find yourself in that situation; however the chaotic and unusual environment that is school can exacerbate traits and symptoms, so be aware that a prompt diagnosis can provide a useful backing to gaining support in dealing with this.

All this is very interesting .... DD is 8 and waiting for first CAMHS appointment. She's always been noticeably (to me) different in certain situations, except academically where it's all fine. She's borderline something, but what?

Yes (sort of - in that I've never sought a dx, so I have no 'proof' either way). I have wondered since DS was a few months old whether he might be on the spectrum. My suspicions that he might have Asperger Syndrome were strongest between the ages of about 2 and just 4. I was on the point of seeking a dx, but decided to talk off the record first to an SEN adviser at DH's school (he's a teacher). She'd never met DS, but suggested that our first step should be to speak to his (excellent) nursery and get their view. They were pretty surprised that we'd suggested it, and that gave me real pause for thought, as they've seen a lot more preschoolers than I have! We decided to hold off the dx path and see how things developed. Now, at age very nearly five, I increasingly think that DS is not on the spectrum. Although he has quite a lot of the traits - socially awkward esp with his peers, likes order and routine, long attention span for certain things - he lacks others - no obsessive interests, for example - and many of his possible traits (eg adherence to routine) have got better and better as he's got older. I am now fairly convinced that he's just a shy, slightly anxious, very bright, rather quirky little boy who finds a few things difficult.

OP, I'm particularly interested because it sounds like our children are in exactly the same boat (both boys, both nearly five, both just started Reception). Can you tell us a bit more about him/the nature of your concerns, and we might be able to give better advice?

Thanks for all the responses.

I tried to keep my original post short and to the point, really, and when I described DS1 as 'shy', 'stubborn' and possibly a 'late developer' I guess I missed out a lot of other stuff.

Other issues include: very bright in terms of learning numbers and letters, fantastic memory (he once wowed a circle of doctors around his bed as he read a book from memory while in hospital after an asthma attack), limited imaginative play, can get upset by changes to routine, gets obsessed with certain TV programmes/DVDs for weeks on end, only just started drawing and trying to write his name, usually goes in another room when we have visitors (although often slowly comes around once they've been here for a while), physically a bit awkward (best way I can describe it), was late to jump, very disobedient at times, seemingly no desire to please or be like his peers (e.g. if you say 'you are nearly 5 now, you should be feeding yourself like your schoolfriends', this has no impact whatsoever), can undress but needs help and constant reminders with dressing, finds it hard to sit still... so you see what I mean!

However, he is improving in some of these areas - he is now eating a good, balanced diet (although we sometimes have to feed him still), he potty trained well aged exactly 3 after a few weeks of a 'battle of wills', he sleeps very well (needs lots of sleep because he is so physically anxious I think), he enjoys going to playgrounds, using his scooter, getting better on bike (with stabilisers), likes messy stuff like sandpits, glueing, can now cut out with scissors, has a laugh being thrown around on the bed with his dad, sometimes he now understands SOME changes to SOME routines as long as it's explained to him, he is a bit more interested in other children but he often talks with them in an argumentative way or just plays superficially in games like chasing etc

He also doesn't play with toys much apart from laptops, computer games, etc but he does like books and occasionally has 10 minutes playing with Lego.

I was shy as a child myself and am still quite introverted at times. I like the way I am - I like it that I think a lot and I wouldn't want to be any other way. It is not the possible shyness that I am concerned about - if he's shy, sensitive, etc, then so be it. Also, I don't care what his interests are - if he's not sporty then fine. I just want him to be happy.

As he is still young and I don't know if he has borderline anything or if it is just an extreme personality, I feel like I am going around in circles when I worry about it.

I think I have done the right thing by starting the diagnosis process as it may be that at some point he'll need help and we'll be closer to getting it.

At the moment, he has surprised us all by quite liking school (there was a wobble during the first week). I have not yet mentioned my concern to the teacher as I want to see how he settles in without colouring the teacher's own judgement. However, she has put little signs on the whiteboard with pictures of what is going to happen during the day. She said these were for DS1 and some of the others. So, she may have an inkling...

Ridiculously long post - thanks again for all your responses. I'd be grateful for any more advice / your personal experiences.

Can't stop, but will try to post later. Just to say, your son sounds extremely similar to mine - or, at least to how mine was until about 6 months ago - very similar abilities and difficulties. So could just be a matter or time? Do keep us posted on how you get on.

very interesting thread - learned a lot from it

I am convinced my daughter is an aspie, but her tests have come back inconclusive, she dropped out of school last year after starting comp. The Psychologist says she has some very strong ASD traits and anxiety issues, but is as yet unwilling to diagnose, after two years in the system I'm frustrated to hell. She's 12 and a half now and has started to compare herself to other kids, she's noticing the differences, asking questions and I still can't give her any answers.

Aha.... Mouth, your more recent post explains much more. I suggest you try googling "Dabrowski's Overexcitables". Try the NAGC website too. There's a lovely specialist called Simone de Hoog who has helped us tremendously with our DD (who sounds rather similar to your DS) Hope this helps.

Hello ... new here ... Please can anyone help me with advice for independent senior schools in Kent for child with Aspergers .... I am looking at Bethany and wonder if anyone has advice/experience of it? Thanks!