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?

Why a late developper? Shyness is not illness, it's a trait of character, as is being introvert, preferring one's own company etc.... Not everyone needs to be popular, have loads of friends and be an extravert, it takes all kind of people to make the world go round. I'm not sure labelling an illness to these traits is fair on your DS or particularly kind. How would you feel if after your second referral the "experts" say he's absolutely fine? Children give us back the image we have of them. They actually want so much to be loved that they'll play the part you've ascribed to them.
You've described your son as either ill or a late developper.... Uhmmmm

We had similar with my elder son. he seemed to have little empathy and while he had a close friend, seemed to struggle socially. When he was about 8 ish, we found that he was getting bullied he then became anxious when in school and had lots of Aspereger types of behaviours. At home however he was a lot different, quite funny and relaxed. Anyway after a couple of years he ended up getting referred to the psychology service. At the initial meeting the view was that , taking everything into account, if we went for a formal assessment at best it would come out borderline. By this point he was getting on ok so we felt gettting a diagnosis (or not) would serve no benefit. He is 12 now and in High School and while his social skills are still not great, he seems to manage to make friends and get by okay. He is happy and that's the main thing!

An assessment may not give you any answers.

Even if you don't get a dx, it doesn't mean there are no asd traits.

Ds1's gp referred him as he was convinced he was on the spectrum - he said ds1 made the hairs on his neck stick up. (!)

He was dx with ADHD, anxiety/ phobias and has some asd traits. D I think this is correct? Not especially - I think it's a descriptive package of what they saw at the time? Do I think it possible to ever get a definite and accurate dx for borderline kids? No, not really. Will ds1 always have his quirks? Yes, probably. Is it worth supporting him in learning coping strategies? Yep, of course. Does it matter whether a borderline child is dx? Difficult one, because most borderline kids don't get offered support anyway, so it's pretty much up to parents to read up and try to introduce stuff that might help.

With 'borderline' kids, it usually comes to ahead around 8 or 9, when of they have noticeable issues, they become more noticeable in comparison with peers. Prior to that, it is usually a case of wait and see. It depends whether at that point the issues are problematic in context (ie school) as to whether anyone bothers to do anything ie referrals.

I think you're doing the right thing by getting it checked out by the community paed or a developmental paed if you can access one as only a professional can really diagnose it.

If he doesn't have aspergers the assessments will show this and if he does, then it will come out that way. It takes a long time and multiple professionals - Ed psych, Clinical Psych, S&L therapist, Paed and even OT - to diagnose someone so it is highly unlikely for a diagnosis to be made if there's nothing there.

I went through this process with my DS after the school picked up that there may be a problem and we went into it with the attitude that at least we'd know one way or another.

JollyJumper Asperger's is not an illness!

I'm pretty sure DD has Asperger's/HFA and we want to get her assessed but getting anyone to even start the process is proving problematic! I don't suppose she'll get much more help at school than she is getting anyway (there is some to be fair). School have said as much. She's flying academically and is very well behaved so the fact that she can't maintain friendships and is miserable isn't likely to get her much support :(. What I am hoping is that if she gets a dx it will help her to understand herself better and understand why other people have trouble relating to her.

I am glad you said that cute, jolly jumper that was a very strange thing to say!

I was pretty certain that my Dd3 had ASD/Aspergers, my family didnt support me, her preschool were clueless and her first primary thought I had munchausens by proxy!!

It turned out she does have ASD/Aspergers and she does need support at school. She will need a very good transition into secondary.

OP, if you think your DS needs further assessment, go with your gut instict. You could save him and yourself a lot of heartache in the future.

Good luck

My ds has lots of ASD traits and a paediatrician was very happy to diagnose him with AS but he is very happy with the way he his and it doesn't hold him back so we gave him the choice and he rejected the diagnosis.

The line on the spectrum beyond which someone is diagnosed as 'having' ASD is just an arbitrary one.

The only reason an actual diagnosis might matter to you is if it helps you get the support you need and ideas for strategies to use.

I think you're doing the right thing keeping an eye, but if he is not having any problems then I don't think you need to do more at this stage.

Are there other concerns you've not put in your OP? I'm not sure how being a bit shy and/or stubborn could be late development.

I apologise if what I said offended anyone. I'm reacting quite strongly to this because my DN was sent to therapy at the age of 3 for one year simply because he was different, shy, couldn't make friends at kindergarden (this happended in France) and was aggressive to others.
He is now 10 and he is still slightly odd/different but the therapy and labelling was completely counter-productive as it just increased his own feeling of helplessness, he's incapacity to please his parents and he thought there was something "wrong" with him when there wasn't, he's a special little boy that's all.
I just think some parents are too quick in labelling and are comparing their child to peers and noting differences, which is absurd. They are all different. OP mentioned her DH thought she was pushing it too far, the nursery was split about her own diagnosis, my point was just is it not simply his personality? Does it have to be an issue? What are you telling your child when you put him through this process, that he's not "normal"?

The way it was handled in France was likely to be very different.

Have a read

That's not the point schobe.

I don't think you can judge all parents decision to seek a diagnosis as wrong based on your one experience jollyjumper. I find the term label quite offensive actually. My son has a diagnosis not a label and i'm not sure how pretending he is the same as everyone else is anymore helpful given that he isn't. wonderful and gorgeous and a delight (most of the time) but the same? no he's not

"What are you telling your child when you put him through this process, that he's not "normal"? "

"not "normal" is pretty offensive too.

I am fairly sure my eldest has AS, she has many many traits, but like many girls with AS she manages so it is masked a lot (helped by the fact that she is a very quick learner).

I have AS, my mother and sister have AS, I know what I'm looking for.

You know your child better than others, you can see when they're baffled or angered by something, even if they hide it outwardly. Children with AS can get through school perfectly well, but sometimes a recognition of that condition means they can access a whole lot more support and/or understanding.

It's not going to hurt to approach your GP or school if you have some evidence to back up your concerns.

Lord, if we have to stick to the point in threads, where would be all be?

I actually thought it might be helpful. Silly me.

ds was assessed for autism and it turned out he had severe glue ear. As soon as the glue ear was treated his behaviour and speech dramatically improved.

A lot of people have one or two traits, there needs to be more then a certain number for an aspergers diagnosis. Also, a lot of the conditions overlap, which makes diagnosis difficult. Dyspraxia, for example, can be combined with aspergers, or can occur on its own. Dyspraxia and aspergers also include problems with social skills.

"What are you telling your child when you put him through this process, that he's not "normal"?

"I'm not sure labelling an illness to these traits is fair on your DS or particularly kind"

It sounds like your attitude is the damaging one, not your dn's parents - its not a label, it's a diagnosis, it's not an illness, and describing children on the spectrum as not normal is nasty.

DS was jut dx with Aspergers (a syndrome not a fucking illness, he's not fucking ill!). His dad and their family thought he didn't, but they only see him twice a month. His school, nursery, and all the professionals agree that he has. We needed a diagnosis to get him the support he needed.

Gold I put normal between " " on purpose. But never mind, it was obviously lost on some.

it isn't less offensive if you use inverted commas

Jolly, I think Schobe was explaining that in France they do talk about ASD as if it were an illness and very few people outside France support this. So it's understandable that your DN's experience in France left you very wary of the idea of seeking a diagnosis.

I agree with madwomanintheattic.

DD has been through CAMHS for assessment.

Because she is bright and of a naturally sunny disposition and wants to please people she has not been diagnosed.

Her rigidity, anxiety when routine changes, deterioration in eye contact when stressed, repetitive behaviours have been dismissed.

The fact that she is good at imitating other children and has picked up on the techniques and strategies that her ASD brother all mask her ASD traits.

FIL, DH and DS are all HFA, so I do know what I am looking at...

Ds has social skills issues, he's also very sensitive to sound and touch. The paediatrician he saw in Jan has said he's not on the spectrum, just lacks self confidence and is over anxious. I'm not too sure where social skills issues comes into that, I'm sure he's dyspraxic though (which she didn't disagree/agree with). It can be very hard trying to get a firm diagnosis.