Anyone out there who didnt have a clue that their child was ASD or Aspergers?

[ALMummy]

My DS is 5 and currently awaiting assessment for possible ASD or Aspergers.

I ask this question because constantly at the back of my mind is the thought that I should have realised something was not right but I just didnt. DS was my first and the only real thing I noticed was that his speech seemed delayed. He is fully verbal now though - just few little quirks. I didnt have a clue otherwise. It was only when he started nursery and he was around other children that he seemed to be a bit different and even then I didnt really feel that it was a problem - just thought that he was an individual. I keep thinking that as his mother I should have known and I have done him a real disservice by not getting the process of assessment started sooner.

Hope I am not alone or I will feel even worse .

Your certainly NOT alone ALMummuy.

I sort of alway knew that DD was abit differant, but i never actually thought that she was on the spectrum.

The big differances only really became clear when she started pre school at 3. I searched online for answers when she was about 3.5, this is when i first heard about AS, but after looking at the figures and seeing how rare it (even more so in girls), made me rule AS out at this point. I actually thought that she was gifted and this was why she is quirky and why she couldnt relate to the other children.

Even now 6 months after DDs DX i still have days where i think that the professionals have got it wrong.

Dont beat yourself up for not picking up on things sooner, very few children are Dxd with HFA/AS proir to starting school.

Its a really hard place that your in at the moment ((hugs)) . I found the not knowing extremely hard to deal with. It gets easier, i promise.

I didn't have a clue either - I really thought it was just delayed speech. I have an NT son of 16 months now and I am shocked when I think back to how unaware I was of how different my first son was in so many ways. But I am sure that for those for whom the ASD child is the second one, it might still be hard as there are so many people out there who keep re assuring you that 'oh they are all different, you mustn't worry !'

It's my third child with the potential aspergers dx and we didn't guess. Problems started at preschool. The only thing we noticed was he liked to play alone.
His language wasn't significantly delayed, although slightly later than other dc.
We are on school holidays at the moment and ds has been great, plays all the time now with siblings, no melt downs, lots of conversation. Making me wonder if he really is ASD.
We have been told verbally of Aspergers traits and are waiting paed dx. So I suppose I'm saying that even an experienced parent can miss these things and especially with Aspergers where the children are often very bright.

we had no idea either - realised he was a bit different but actually took the old saying about all children being different to heart and didn't worry! ds got diagnosed at age 5 too after school gently suggested that he may be on the autistic spectrum.

Me,
I thought he was different, got dx at 12 after about 2 appointments. i thought when he was younger he had dyspraxia, and that if he had anything it was too mild to dx.
His speech was very advanced, but lots of social and sensory issues.

I thought ADHD at first, which was why we requested assessment. Had heard of AS but didn't really know what it was. Felt a bit gutted tbh, thought we could sort his problems out with meds, but now I realise we couldn't have done that even if it had been ADHD.

There still are elements of ADHD with J, he probably should have got the dx years ago but he won't now that he has AS because the symptoms fall under the ASD umbrella. Yet more neglect by his former school.

Thanks for all your replies. I was hoping that I wasnt alone. It is very reassuring to hear other parents stories.

Its a difficult time really waiting for this assessment. I dont know how much of his behaviour is down to the ASD/Aspergers etc. I dont know if bratty behaviour should be handled in a different way etc because he cant help it. As he is getting older I am seeing more and more quirks in him but I also think this is because I have read up so much on ASD etc so know what I am looking for now.

Riven I am amazed that his school would say that. How can a childs home life be "too nice"? At DS's first nursery (a very small private one) the other parents were really frosty to me and I realise now it was because I hadnt picked up on his problems and they probably thought I was a crap mother for that.

My 2 sons are 10 and 12. I picked up that my older one was likely to be mildly AS because of the spinning actions he did with his hands as he walked across the playground. After he left primary I asked the head if he thought ds1 might have AS but got a flat no.

DS2 has started the walking around on his own in a room making his own noises and whirring his hands. That started maybe 2 years ago. He does it when he needs to and is happier and more settled again when he has finished. CAMHS suggested he too might have AS. I was quite shocked at first, but it does seem very likely.I have been told by school he is manipulative and needs me to put firmer limits on him. He is home ed now and a lot happier. I had always thought he was NT compared to ds1.

I too thought they were just themselves. Actually I'm sure that's a very loving attitude and I hope they treat me like that when I'm older and get more quirky myself!

I only started reading all the books because I found my husband so hard to live with, then it started to fall into place re ds1. But now I'm questioning where I am on the as/nt spectrum.....I'm confused, but I'm the mum and have to sort it all out somehow.

"I dont know how much of his behaviour is down to the ASD/Aspergers etc. I dont know if bratty behaviour should be handled in a different way etc because he cant help it."

Yeah, that's a toughie and I still don't know the answer.

Hi ALMummy it was the same for me too. I thought the only problem DS had was speech delay, then we went to see a pead as the HV had referred us. I nearly hit the floor when after 1 and half hours of questions etc she said the word Autism to me

I was like, 'no way, you have it wrong, you can't be talking about my DS, if he was i would have known'. I felt like such a shit mum and it didn't help when friends said they had kinda thought something wasn't right. I was gobsmacked and wondered what the hell i had been doing for the last 2 and half yrs to not see it!

Now i have come to terms with it so much that it's done a complete turn around and instead of being in denial i am worried to death that in 2 weeks when we have assessment we won't get a dx at all.

But i just wanted you to know that it's not just you, i felt exactly the same, MN made me feel normal again and not like i was the only mum in the world who was going through it. TBH i do still kick myself too for not getting the ball rolling sooner but there's no point in dwelling on it, i'm doing the best i can now just as you are. Good luck!

I always worried about DS1 as he was a very difficult toddler, major tantrums, very shy and very stubborn but didn't worry about DS2 (who has a verbal diagnosis of AS)because he was so calm and biddable. Needless to say they both passed assesments with the health visitor of the build a tower of bricks, point at picture of ball variety so I thought I just had "boys".

Question for everyone else; Since you have been aware of ASD because of your own child have you started spotting it everywhere? I have am very aware of several children I suspect are on the spectrum, including the daughter of a good friend who has been privately diagnosed (by one of those alternative clinics) as having dyspraxia caused by retained primitive reflexes! I suspect that she has AS but her mother would never contemplate it so I have not dared to suggest it. she is being sent to private school (after much struggle and string pulling to get her in, I am hoping she does OK as i have known her since she was a baby and am fond of her).

We had no idea, we were referred to a child development check with a paed when DS was 2.3, after 30 minutes she diagnosed ASD. We though he was just a late talker, ASD had never even crossed my mind so it came as a bit of a shock!

We went through the usual stages - from 'no, she must be wrong! we need a second opinion!' to 'we have lost our son' to 'surely we can fix him? there must be something that we can do!' to 'he is our son and he is lovely just the way he is'.

It's not easy as you all know, but in many ways it's been a blessing, and definitely the making of me as a mother.

im currently awaiting my gp appt for ds( 4 week wait)..Id had nagging feelings for about 2 years that something wasnt quite right..but it was very subtle..hating noise, crowds, collecting things, speech delay and even although he is 7..his speech is weird..kind of slurry..but hes very fluent now in his actual conversation

Drowning - I'm really surprised a child that age was diagnosed with an ASD after half an hour. How is your ds now?

allytjd,
regards seeing it in other people you know, I have had this experience since ds was dx'd, and I think the child's symptoms are in some areas much more pronounced. I dont know how to say to the parents, as they see their boy as "sweet", which he is in nature, but also has loads of AS traits which cause him difficulties. Like you, I wouldnt dare say anything, for one reason she recently complained to me that my ds was picking on him, it would be like I was saying "he brings it on himself". She doesnt know about my ds's dx.

nikos - I know! the paed is a real witch though. I was 8 months pregnant with DS2, she pointed at my bump and said 'you know, there's a high chance your second child is on the spectrum as well'. Talk about diagnosing early !

That was 2 years ago almost to the day, he has lots of sensory issues and a very delayed speech and language, although it's coming on now (yesterday he said 'it's raining' and I couldn't stop kissing him!).

Originally I thought that ds1 (ASD) ignored everyone and couldn't speak because he couldn't hear. I had no idea that in fact he had the opposite problem and that everything was far too loud for him. I also had no idea that he had any problems with fine motor skills until I read the report that the Early Years team had written after observing him at pre-school. He was 3.5yrs old and assessed by the OT as having the FM skills of a 12-18mth old and I had no idea.

I don't think I would have realised that ds2 had ASD if it hadn't been for ds1's dx. I suspect I would have put his behaviour and odd ways down to him having a quirky and somewhat eccentric personality. Ds2 has always been like a little old man inside a child's body.

Yes, I keep seeing children around who I strongly suspect are on the autistic spectrum. Dh and I also keep dx'ing characters on television programmes too.

Iwearflairs, I didnt want to think there was anything to be concerned about so I grabbed on to anyone saying that he was just being "a boy", "boys speak later than girls" and my MIL who said she had had 4 kids and there was "NOTHING wrong with that boy". Even when concerns had been raised at nursery I didnt get things started re GP etc because I just didnt want to believe it and DH got quite angry with me for even considering it. I never had the lightbulb moment either when I was reading up about it. Yes there were a few similarities and yes he did do a couple of the things like lining up cars and echolalia (though that passed) but nothing concrete. TBH I just dont see it as a major problem now. It is just who he is. I was surprised that the things he did actually had a name they just seemed so minor.

As for seeing it in other people or kids that is certainly true. TBH I think DH has some AS traits and quite often see people on TV that could be too. Also I remember people in my past who I couldnt quite connect with and realise that its possible they were ASD or Aspergers. Think kids must have got an awfully raw deal a few decades ago when not as much was known about it as it is now.

Just curious - what were the things you think you SHOULD have noticed?

When DS was smaller he would never I used to take him to story time at our local library and he would never sit or seem interested in the story telling, always just wanted to run around and at playgroup he would make for the same toys (car track) every time and was never really that interested in interacting with the other kids - though he did sometimes. There was also a sit down and snack time there and he wouldnt sit down for that - always had a tantrum if I tried to get him to do so. When he went to nursery we were really worried because we couldnt see how they would get him to sit down and get involved in anything. It sounds like a lot now but at the time it all seemed minor and just part of his personality.

iwearflairs do you know I was thinking exactly this about myself as well. When I was a child I remember going through a very long stage where my hands felt really uncomfortable and dry and I would constantly have to go to the bathroom to wet them under the tap or even lick them. I read a site yesterday that says some ASD kids will lick their hands for the same reason. Also I find it incredibly difficult to make eye contact and meet new people. Apparently my Mums friends used to tell her I was "sly"! because I was so quiet and just sat on the fringes all the time. It does make you wonder doesnt it? Also I prefer to be alone always except for my immediate family - kids and DH.

AL - DS was just like that at about 2.5 - 3. (DS supposedly probably doesn't have ASD, "just" speech delay but I'm not holding my breath...)