DS1, just 4, asperger's traits - is it worth going down the diagnosis route?

[Mouth]

I have felt there is something different about ds1 since he was around 2.5yrs, which has been backed up by some comments rfom his pre school. However, it is not extreme and he is happy enough. The main 'differences' are - excellent memory, doesn't really do 'normal' conversation, often doesn't answer questions, gets angry quickly, quite fixed in his ideas, not sure he gets 'why?' questions, quite literal, doesn't want to write or draw... However, he does talk and there are some fairly conventional exchanges. He doesn't have or seem to care about having friends as such but over recent months has started joining in with kids at pre school much more. He even had, and enjoyed, a birthday party. He is potty trained - day and night. He doesn't have a huge appetite but has got much less fussy with foods over the past year. He does like being swung about, tickled, getting messy etc

I do think there is something not quite 'normal' - probably Asperger's - just. But is it worth getting him diagnosed or would it be better to wait and see how he fares at school next year? One side of me says no harm in getting seen asap (but there is lots of pressure from family and even nursery to 'wait and see'), but the other side says I don't want to drag everyone through a possible diagnosis unless it really is worth it. As everyone keeps telling me, they develop at different rates - and some of the stuff I have been worrying about has been getting better over recent months.

Confused. I know I sound quite calm, but sometimes this keeps me awake ALL night! So any advice would be received gratefully. Thanks!

Get him diagnosed (if you can)

These traits which sound minor in a preschooler, can easily and quickly become a big deal in a school aged kid. ( gets angry quickly, quite fixed in his ideas, doesn't want to write or draw )

And the dx process takes so long (at least a year), you're best to get started now.

Go to your GP and request a referral to a child development paed.

Good luck.

Thanks for the quick response! Yes, the problem is that in a pre schooler some of this behaviour can be explained away as tantrums, but I don't think it is. Or maybe we've been too soft on him. But it is the nature of the things that can upset him which is a little 'odd'. For example, if he comes into our bedroom and me and dh are on different sides of the bed than usual, he could start shouting at us! (But not always, if there is something else on his mind...) There are some things that are shouting out to me that it would be of benefit to have him at least see a child development expert. Even if it turns out that he just has traits or has some OCD characteristics... My dh is against going down the diagnosis route but I think I could persuade him (although I'd be ridiculed at every stage...)

Would concur with Indigo here; your concerns for your DS warrant further investigation now because you have and still think that something with him is amiss along with preschool showing concerns. Your family members may well be in denial themselves as to the extent of your son's difficulties, they do not see him everyday like you do and you know him best.

GP should refer you to a developmental paediatrician.

Thanks. I have been keeping a notebook with any concerns in it, but have not used it for a while. Problem is, his behaviour becomes the norm, so it gets hard to pick out the examples. His eye contact is good, but sometimes you just can't get his attention when you want it. I know I should do something about it - even if it turns out to be nothing and I'm just over analysing.

Don't believe that because Nursery work in Education they know anything about Aspergers.

This is one real problem parents have at the start of the journey. When school / HV etc tell them not to worry, they believe them because they're a professional

If you spend 10 minutes researching Aspergers, you'll probably know more than the nursery staff who told you to wait and see....

For what it's worth, I don't think anyone on this board regrets getting a dx, and many, many of us regret it taking so long, or the time we spent in 'wait & see'

Also remember getting a dx is hard, they don't give them out like candy. So there is almost no chance of him getting a dx when he doesn't have Apsergers.

I cant add anymore here really other than trust YOUR instincts. You KNOW him, nursery cares for him and there is a big difference. :)

We have a dx of social communication disorder, and DS sounds very similar in a lot of ways to yours. It took us 18 months to get a dx: they are hard to get, and in some ways harder if your child is only just on the edges of the spectrum because HCPS are reluctant to dx and tend to want to 'wait and see'. My DS Needs are minor and subtle, but they are still his needs and they deserve to be met IYSWIM. I would have no chance AT ALL of getting support for him without that bit of paper. I say go for dx.

I think the average age for dx aspergers is well over 4 precisely as it often only becomes an issue once in school. That said dx might not necessarily bring much in the way of useful help for a very HF child. Knowing what I know now about the system and in the scenario that DS was more high functioning I might well opt for a sympathetic school / flexi school and bit of parttime private ABA / SALT to smooth out the rough edges because all the LA professionals we met made our lives worse not better. Getting a Dx led to nothing but a lot of professionals wasting time trying not to spend any money on DS with the result the provision they put in was, although cheap, totally ineffective.

Most schools & NHS SALT are not much use at the ASD type behaviour / social skills / OCD (which may just be typical ASD rigidity) problems. If you could afford some private ABA or specialist SALT to work on these areas and had a school prepared to work on similar lines / be trained then you would actually have a better package than anything a mainstream school could offer you even with a dx. In my area anyway. But if you would just be relying on school then I would probably get a dx. Also secondary can be a major issue so even if you delay for now, it may be that it becomes a bigger deal later on.

Check also if your local NHS has a pathway for dx older children. Due to funding cuts our area has stopped dx children over 5!

My dh got his diagnosis at 33! It made such a difference to him.
Ds was diagnosed at seven. It was worth it. We had a good gp, although, by this point I'd done all the research. He referred us to the place I'd requested. Again, huge difference, and due to diagnosis so many things in place for all my children that wouldn't have been without it. As a result, dcs are coping and have lots in place at their various schools. It really is worth it.

Hi
I'm in a similar position with my DS who will be 5 in Feb. He didn't talk till 3 and has final consonant deletion issues but amazing grammar if you can understand him (;some days his speech is better than others). When he started nursery he used to ignore children his own age and only interact with older children but we put this down to having older siblings and cousins. He now has lots of friends in his class and is very popular but his speech has barely improved in the last 6 months. He's due to start his second set of speech therapy sessions after Christmas.

He's also reluctant to write and having difficulties with pen grip and deciding which hand to use. He has a couple of sensory issues and is a fussyish eater. He has an amazing memory and amazing observational skills (told me that speed cameras make cars slow down but then they speed up again after gone past and has noticed that if people laugh whilst telling you something they're tricking you!).

I also have a dd who will be 13 next month who is currently going through the diagnosis process and is highly likely to be diagnosed with Aspergers/Dyspraxia/SPD and is having major difficulties. I have been advised not to wait to get my DS assessed as he is nearly 5 and under 5's are assessed at the child development centre which is a multidisciplinary team and are very good with only a few weeks wait. If we wait till later then he will have to be assessed by CAMHS and all the individual services organised by me and they are rubbish! We are still going through process 18 months after referral!

The salt asked me if I thought it was the same as my daughter and I replied I just don't know! I think it may be hypermobility with his hands. His gross motor skills are excellent. He has a lot of empathy and social understanding, in advance of what you would expect for his age and he can be reasoned with so I'm doubtful about ASD.

Sorry about waffling but what I'm trying to say (I think) is check out the services in your area like the previous poster said and if like in my case there is a massive difference in services then that may make that decision for you as it has for me x

Your son sounds very similar to mine. I went down the diagnosis route a year ago and the paediatrician ruled out autism categorically because our son doesn't tick all the boxesa and did (reluctantly) what was asked of him in an environment where it was quiet and there weren't lots of things competing for his attention. My son isrte not obviously autistic and is very bright but his speech is delayed and those of us that are close to him have sensed that something is not quite right for a very long time.

As I've started on the road, we have to carry on with the assessment procedure but do you know what - if I knew then what I know now, I wouldn't bother as the reports I've got won't get me a statement yet I know that my son has high functioning autism/aspergers and if he isn't helped he will get worse not better. We are paying for private verbal behavioural analysis - we've not even properly started yet, just got a programme but I've been reading about it and changed the way I parent about 3 months ago. The difference has been immense. My son used to be obsessed with spelling and adding and now is so much more engaged with us all. My advice to you is that even if you don't have much money read Catherine Maurice's Let Me Hear your Voice and look for manuals on ABA/VBA on Amazon and adapt your parenting methods (eg stop being soft on negative behaviour, make sure you praise the appropriate behaviour to the skies) and even without consultants and tutors you'll notice a big difference quite quickly.

Hi OP,

I am going through exactly the same - DS1 is 4 next week and I don't know whether he has ASD or not - I literally change my mind a few times a week. Sometimes he can be so great and I think I have imagined it all and then the next day can be awful and I start worrying that I am letting him down by not getting him the support he so clearly needs.

FWIW we are pursuing a diagnosis. We have had one appt with dev paed and have a 2nd appt in Feb. I think I need to know, my other DC need to understand why their brother sometimes behaves the way he does, and I think it will also help DS himself - IF he does have ASD.

Although your DS is currently doing OK, if he does have AS, things are likely to get worse so starting on the road to diagnosis can only be a good thing. I don't think you have to accept the diagnosis if you don't want to, and of course you don't have to tell anyone - but it might be helpful in the future and as someone said, few people seem to regret getting a diagnosis but plenty of people regret not getting one earlier.

Thanks for all the advice. Lots of these responses sound similar - for example he has good days where I think 'he is fine, just a few quirks which make him him and we can manage' and then days where I think 'we need to do something as this is controlling all of our lives'!
If he has Asperger's he is very HF. It does reveal itself to others though. His 6 year old cousin said 'sometimes ds is deaf' and my step dad said 'every time he watches Toy Story it's like he's watching it for the first time'. These comments were said flippantly - but they picked up little facets of his behaviour that may appear more strange the older he gets.
I am thinking hard about what to do. I am sort of waiting and seeing but am also reading around, finding out about options etc.
I have applied for local primary with excellent Ofsted but there is a smaller primary nearby which has a dedicated for children on the spectrum or with ADHD probs. This was put down as 2nd choice but it would be a good option to move him here if his first choice proves unsuitable. I am also looking into training as a SALT as I have some relevant qualifications. So, doing all I can at present without going down the diagnosis route.
My main concerns are that his conversation is very 'scripted' but he does deviate on good days; he gets angry quickly about strnage things (bit OCD-ish) and I'm not sure he gets why things are funny unless it's very slapstick...
Anyway, thanks for all help so far and any more advice or stories of your experiences would be much appreciated.

Re your second choice school - he won't get into the ASD unit - and the rest of the school may actually know no more about ASD than any other school. (Weird but true)

(In fact my sister was teaching in a secondary school with an ASD unit and she didn't even know that her school had an ASD unit!)

Bite the bullet and try and get a dx. It will give you so much peace of mind.

tricky isn't it? we turned down the option of a multi-disciplinary assessment when DS2 was 3.6. That was the right decision for us because he has gradually been closing the gap. It would be been the wrong decision if the gap had widened. I felt able to made a prediction because the problems were like a deeper version of ones his brother had had and outgrown.

But, on the other hand, if I had to list the top ten most significant good and bad decisions I made, dx or not dx wouldn't even make the list. Brainstorming on this board, putting in a couple of hours a day playing with him, reading good materials, nurturing his relationship with his brother, keeping his dad onside, getting agreement for him to have an extra nursery year and start reception at 5.0 - these were the big, important decisions. Keeping him in a crap nursery for too long - that was a bad decision - but guess nobody's perfect :)

When you are right on the borderline, it becomes meaningless to talk about "having" aspergers as if it was the same as "having" measles. I slightly prefer "ASC" - calling it a condition rather than a disorder allows for the fact that it can be no bad thing to be a bit like your son (or like me).

yes Lingle it is really tricky. and I am seeing him outgrow certain behaviours, and he is having phases of other behaviours. he had a birthday party and ran around with the other boys, didn't seem too self conscious at the party table and it was a real success. and he used to be fussy about food but is coming on no end. he is also a first child so doesn't have older siblings to copy. my gut feeling is there is something 'not right' but it could just be traits. I think if we didn't try to get a diagnosis, we would still try to help him through using parenting techniques we read about, and so on. but I don't want to lose time if by getting a diagnosis now, it may help him sooner rather than later if he ends up needing that.
besides this, we have a 17 month old son who I am noticing similar traits in already (sometimes I wonder if I am just going mad?!) I wouldn't have noticed these traits in ds2 were it not for the concerns about ds1. but he isn't talking yet apart from 'mama', does not really eat (mainly milk and the odd bite of something off our plates), does not like doors being closed, HAS to open and close the alarm every time we come in the front door. he did not particularly like being held from 9-15 months but seems to be relaxing a bit more now. he does not like strangers or strange situations. he doesn't always answer to his name and was slow to get bye-bye (but now he does it all the time!) so once again, I am in a bit of anguish about this cos once you start noticing it's hard to stop...
when you hear about early intervention, you start panicking that you should be doing something, but you don't want to act needlessly either.
am I mad?

Mouth, so much of what you say could be me it's spooky. Every good day I think I am just some kind of crazy neurotic who is trying to give her son a disorder - and then he has a bad day...

All of the following would perfectly describe my DS too:

• 'sometimes ds is deaf'
• it's like he's watching it for the first time (Fireman sam in my DS's case)
• conversation is very 'scripted' but he does deviate on good days
• he gets angry quickly about strange things (bit OCD-ish)
• I'm not sure he gets why things are funny unless it's very slapstick
• used to be fussy about food but is coming on (slightly)

I also have a younger DS (21months) who has some similarities but I am not worried about him and FWIW from what you describe your DS2 sounds fine to me

ATM my plan is to behave as though he does have AS and see that as early intervention - if he turns out not to then there is not harm done. I found a really useful thread on here yesterday about managing difficult behaviours which might be helpful

You're not mad btw, or at least if you are then I am too

Skidd - Glad not to be the only mad one!

How old is your DS1? When I say it's like my ds1 is watching (say, Toy Story) for the first time, it's cos he says the same things at the same time each time he watches it - in exactly the same tone of voice. It's the same with some other things too, like books we read or even journeys we take. Is that what you mean too?

Yes, I am trying not to worry about ds2 and am aware I'm probably looking for it a bit.

Have bought a couple of books about parenting tips for AS and much of it rings true to me - whether he has it or has traits, so I suppose, like you, trying to provide my own sort of early intervention. Unless things change and we go for a diagnosis before he starts school, I am not going to mention my concerns to the primary school teacher, so I will be really interested to see whether they pick anything up.

Hi Mouth,

That's interesting - no, with my DS it is more that he is equally excited and glued to Fireman sam whether he has seen the episode once or 20 times. In fact he is probably more excited when he has seen it lots of times. He also has no preference for English over other languages, e.g. if I let him watch Fireman Sam on You Tube and select a Russian one by mistake, he doesn't even seem to notice - it's like it is just the experience of sitting in front of FS - he doesn't actually care what they're saying IYKWIM

My DS is 4 tomorrow . He is at pre-school (mornings only) and they are in the same room as reception so I sort of feel like he is already at school and the school have no concerns about him, and in fact I feel like a mad overly-neurotic nightmare mother whenever I try to talk to them. They just think he's shy. But tbh when I see what they have to deal with (one little boy does have ASD, two have ADHD and there are quite a few other children with challenging behaviour), I can see why my ultra-passive DS wouldn't stand out. He doesn't cause problems so they're not worried - I think lots of others on here will tell you they have had a similar experience.

Does your DS have difficulties with routine/transitions/change? This is our main problem atm and we are trying to find new ways to help him with this. Every morning and every evening is a nightmare with screaming, refusal to do what we ask culminating in long intense meltdowns which completely exhaust the whole family. If you have read any books which you think might be helpful in this regard I would be very grateful if you could pass on titles. I have read Tony Atwood's book on AS (forget the name) which is pretty good.

Good to talk to someone in the same boat and will be watching this thread to see how you are getting on. Please keep us posted

Hi Skidd,
Ah, my DS also has favourite episodes he likes to watch over and over too, but he always makes exactly the same comments at exactly the same time. That's why it's like it's always the first time...
Yes he does have problems with transitions and we really struggle with that too
Gr - battery low on laptop so will try to respond more fully tomorrow!