Normal 4 year old or ASD?

[Jemimabelle]

I have deliberated for months over writing down all my concerns over my ds1 who is 4.5 years old and asking for opinions. About 10 months ago I typed up a list of all his 'quirks' in preparation for him starting in the school nursery so I could prepare the teacher when she did a home visit. Most of my concerns haven't actually been an issue in nursery and he seems to have settled well, but we have recently found out he hasn't been given a place at that school for September (or our 2nd/3rd choices), so I feel like we need to talk to his new teachers before then. Btw, the school he has been given we are actually happy with and have decided not to appeal or fight to get into the original one, partly because they have a better reputation with children with SEN.
I'm on my phone and at work, so apologies for things I miss and add to later, and I might ramble a bit!
After I watched a programme last year with a child diagnosed with pathological demand avoidance, I realised how many similarities I saw in my son. He has always seemed to stand out amongst other children as being the awkward one, not joining with activities at various play sessions I took him to, always being the one who never did as I asked and would run off or cause trouble somewhere. He's very bright, very interested in numbers (but not letters), started talking early and has always been very articulate, seems well coordinated and has recently learned to ride his bike properly, but there are just things about him that I just don't know if I can put down to being a 'normal' 4 year old, or different! He is IMMENSELY stubborn. Everything is a battle. Getting dressed...getting in car properly (instead of getting in driving seat or climbing in the boot while I'm strapping younger ds2 in), walking to school...refusing to hold hands, wanting to run ahead and not paying any attention to driveways or me asking him to stop or come back...eating...extremely fussy, sleeping...getting ready for bed, staying in bed, waking up multiple times in the night to make demands...having a screaming fit about going on motorways (always asks when we suggest going anywhere if we have to go on the motorway and if we say yes...kicks off), hair cuts...you'd think they were cutting his head off!! Nail cutting is also difficult.
Got to rush so trying to be brief but could go into much more detail and give loads more examples. You seem to have to handle him in a certain way to make him comply...eg make it a challenge...I bet you can't get dressed before...but the novelty of these ways wears off for him. I've done the Webster Stratton Incredible Years parenting course which I found extremely helpful, but I do find it hard to maintain techniques when I'm getting to the end of my tether. Other things that I'm aware of are that he will not join in activities that other children are doing. I dread certain birthday parties for this reason, and we went to one yesterday. Lots of traditional party games that he refused to join in, and either was trying to disrupt the whole thing by running around the room pushing his younger brother over when he had a chance, or sitting sulking because I'd made him come and sit with me. He doesn't really seem to play with other children unless they do exactly what he orders them to do, and usually likes to chase others around which is not always appreciated. He has one particular friend that he has totally clicked with, mainly because they are equally silly with the poo head and wee face type names they call each other (most other kids don't like that either). It makes me sad not to see him enjoying himself at parties etc like all the other children. And I try so hard to be firm, consistent and patient with him, but find it exhausting! I avoid a lot of scenarios with him because I know they will be difficult, such as big open spaces (him and brother run off in different directions), organised activities (he won't join in), farm visits on my own with the two of them...he just runs off and won't hold my hand, and then ds2 copies.
Basically...any advice or opinions?! Sorry for such a long disjointed post!

[Jemimabelle]

Oh, one other thing that has always been obvious is he will NOT say hello, goodbye, or anything else that is expected of him. He won't say thank you when given something like a present, will make a point of looking at me and saying "thank you mummy" and not at the person who gave it him. Never says hello or good bye to nursery staff when they greet him, refuses to say "thank you for having me" type stuff at parties or friends' houses.

[Jemimabelle]

The only time he says goodbye properly with a kiss is at nursery but as part of a regime...hug, kiss then he will say "make sure you stay on the road for 10 20 30 minutes make sure you do alright bye", all in one rushed monotone sentence, and identical every day!

[Drivingforpeace]

Hi Jemima,
Your message really resonates with me! My DS is also 4.5 and very similar in lots of ways. I couldn't believe it when you mentioned the motorway, mine does the exact same! Not so much now, but used to get upset and beg to go on small roads. Eventually he said it was because the motorway is noisy but I don't know if that was the only reason. Pre school have no concerns either, in fact they think he's very bright, he's the oldest and like yours really great with numbers, and seems to be very well behaved when he's there. Strangely he loves rules and following instructions in nursery and pre school settings and gets quite taken up with 'rules'. But at home it's another matter! Same as you, nightmare with getting dressed ( I still dress him, after ages and ages of asking him to do it). Nightmare getting in the car (well, this has got a lot better recently, but getting him to actually leave the house to get in the car is very difficult, even if it's to go to the playground when he has been begging to go... Doesn't make sense! Until about 6 months ago I still had to carry him into the car and lift him into his car seat which wasn't great for my back! But the biggest thing for me is the running off. Like you, I avoid crowed places or large spaces, he thinks it's hilarious and he won't stop when I ask him too. People say'oh he'll come back, don't worry' but he doesn't, he would very happily keep running and running, not bothered whether I'm in sight or not. So this terrifies me constantly.
Got to go off now but will try and write more later. Just want to say you're not alone! Haven't heard of that syndrome but will google!

[APotterWithAHappyAtmosphere]

So many of these resonate with me too. I have read about PDA before and it chills me a bit how much it seems to be describing DS (3.5). But anyone I talk to says, oh that's just young children for you so then I think I'm being stupid.

We have hand dryers rather than motorways but driving is often peppered with a lot of obsessive instructions about how fast I should or should not be driving. It's the control thing I think. The saying hello and thank you things are totally him too. We have lots of methods and techniques to get through the day but if I am tired or in a hurry then it can all go very wrong very quickly and I feel like, surely it shouldn't be like this 100% of the time?

The crux of it is that I don't know whether it would help DS to have a diagnosis of this kind or not. I guess he might access additional support? But will it affect him more negatively than if we just continue managing and muddling through?

[MattDillonsPants]

OP I think that if you feel you need to "prep" his teachers before he enters school, then he needs assessing so that IF there is an issue, he can get the support to which he is entitled.

However, what you describe don't all immediately point to ASD to me and I do have some personal experience of it.

It's quite possible that he's simply quirky and a bit bothersome!

Have you done the MCHAT test?

www.autismspeaks.org/what-autism/diagnosis/screen-your-child

This is a well respected test you can do yourself...it's just multiple choice questions....and then the results tell you if there's a risk of ASD at all and whether you need to get assessed.

Obviously it's not 100%....but you should give it a go.

[Jemimabelle]

Potter, I think you are right about it ultimately being about control. A perfect example is that ds1 likes to dictate the way we are driving home from nursery...he insists on going through the nearby housing estate rather than the quicker and easier main road. If he asks politely, I go the way he asks. If he demands or is rude, I drive the other way. He goes MENTAL! Kicking, screaming shouting all the way home..."go back the other way NOW, turn around and go the other way, I don't want to go this way, turn around NOW!"
Matt, I haven't heard of that questionnaire I will check it out, thank you.

[Jemimabelle]

Just done it...his risk score is 0!

[MattDillonsPants]

Well that's comforting isn't it! I do think that some parents...me included...can get too anxious about their DC. I was SO worried about Dd1 when she was about to start school. All her little quirks seemed HUGE to me.

But in reality and looking back at your opening post, your DS sounds normal! Like any weird 4 year old...and they're all weird aren't they!

[craftyoldhen]

I think the m-chat is only for toddlers aged up to 3 years so wouldn't be appropriate for a 4 year old.

FWIW a lot of things you mentioned remind me of my DD at that age. She's now 8 and received an ASD diagnosis last year.

At 4 she was very bright and articulate, but absolutely EVERYTHING had to be on her terms. She had sensory problems and lacked a lot of the social niceties you mentioned like saying hello and goodbye, but her very obvious social difficulties didn't become more apparent until she started school.

I would definitely mention your concerns to the new school so they can keep an eye on him. It might be worth keeping a diary of your observations too.

Often children with aspergers type presentation are not picked up until their a bit older, I think average age of diagnosis is 7.

[craftyoldhen]

And my DD would have definitely passed the m-chat even as a toddler. I'm not sure how useful that tool is for picking up aspergers type ASD.

[MattDillonsPants]

Crafty the one I linked to has choices for the appropriate quiz for children aged 4,5 or 6 years or older.

It's the one on the Autism Speaks site so reputable.

[insan1tyscartching]

I think you should ask for a referral to a paediatrician speaking as a mum to two children with autism.It sounds to me like your ds has some sensory processing difficulties so trouble with getting dressed, eating,hair cuts, nail cutting. He shows rigidity so wanting routines and regimes in order to feel comfortable.He shows some repetitiveness so phrases that he uses in certain situations and some social difficulties around friendships with his peers.As well social communication difficulties such as his issues with greeting and meeting socially accepted expectations.Regardless as to what the questionnaire says (and you may interpret his behaviour difficulty to what I might) an assessment from a medical professional is always thebest way to set your mind at rest.

[insan1tyscartching]

*differently not difficulty

[wineandsunshine]

Wow I have just read this thread and so many bits are similar to my son (4) who is starting school in September.

I just did the test recommended above and scored a 4...this has now confirmed to me I need to seek some professional advice.

At times I doubt myself and think oh he's just being a boy or is it just a 'phase' but something isn't sitting right with me in several areas. I have four children, he is the third so do have experience of this age, it's just difficult isn't it!

[craftyoldhen]

mattdillon the quiz seems to ask the same questions regardless of the age you put in.

As far as I know the mchat was devised to screen toddlers only.

[MattDillonsPants]

Really? Golly....they shouldn't have the separate ages then should they? Ideally it would say it is only for toddlers! I'll remember that....thanks Hen.

[PeppasNanna]

Op. I have 2 sons diagnosed with ASD/PDA/ADHD. My boys would have scored 2/3 at most on that test. I wouldn't use it as any sort of diagnostic test, its too simplistic.

I would speak to his class teacher. I would describe the behaviours as you have done here. Ultimately, the behaviours sound very controlling which is normally associated with anxiety in children.

In my experience if there is a problem, it becomes obvious in Reception & Yr1. (Boys that is)

My youngest son didn't display particularly concerning behaviours until the Spring term of Reception Class. He was excluded from mainstream by Yr1.

In the mean time, structures, routine, visual displays tend to help manage challenging behaviour in anxious children.

Good luck...

[Jemimabelle]

Thank you so much to every one who has taken time to reply. It's interesting to hear of so many similarities to other children, those with a diagnosis and not. It seems to me that all these quirks and behaviours can be 'normal' for a 4 year old and not specifically ASD, but it's when they are all put together it becomes actually a huge list of problem areas that taken together rather than individually, might point to something. It does seem to be related to anxieties sometimes, such as when the pressure is put on him to say something in particular, or join in and do as all the other children are doing. It's always surprised me, when he is sooooo loud, cheeky, vibrant etc at home, how shy he can be in situations away from home. And he really needs to feel comfortable with someone before he speaks to them, adults particularly. He does seem to need to control EVERY situation, even when he does something I have asked, there is always an element of compromise. Getting dressed...he will eventually relent and say ok then...you do one bit of clothes and I'll do the rest. Stairs, he always has to go up or down first. Bath, he always has to get in before his brother. Has to have shoes on first. Coat on first. HATES losing...had a massive standoff outside school the other day because for once I didn't have ds2 in buggy so he wanted to race me. There are two points that I make him stop and wait for me...I let him win to the first point, but I just couldn't RESIST winning at the second point and jumping up and down with joy, even though I knew he would hate it! He stomped all the way back to the beginning shouting "no mummy you can't win, only I can win, now you get back here and do it again and let me win"! We both sat on opposite ends of the school wall for about ten minutes, I refused to race him again. In the next it started snowing so I had to go and get him! The stubbornnest child I have ever met! But he is also so lovely. He says the funniest things. And can (occasionally) be soooo sweet with his brother or in other situations it melts my heart.

I think I am scared of seeking further help/diagnosis. I do a job that often makes me feel so humble, and so grateful that I have two healthy children. The other day I met a young girl who had had several major heart surgeries and a short life expectancy, and found out her sister had severe disabilities too. It makes me feel terrible that my biggest problem is that one of my completely healthy, beautiful children refuses to get dressed, or doesn't join in at parties. I have a friend with two children of 3 and 6 who are autistic and non-verbal, she has never heard a word from either of them. And I complain (not to her) that my son hates having his hair cut? It makes me question whether I am justified in looking for problems that might not even be there?!

[APotterWithAHappyAtmosphere]

Jemima I can't tell you how exactly similar your experience is to mine. Honestly I could describe almost word for word those exact behaviours in DS. It's spooky. The insistence that we have to go back and start again if the outcome wasn't right, or rewrite history. Today he was distraught that DH met us at the supermarket rather than at home and spent half an hour sobbing and insisting that he went back to work and then met us at home.

And I am also scared of taking things further, and like you I feel like so many of these things sounds so minor compared to the health and development problems many children face. Individually they could be out down to normal behaviour challenges, but together they do seem like something more.

I hate the idea that this is stemming from anxiety, that somehow I can't make my child feel secure. He is so lovely and warm and brilliant. I guess if I do try and get some help, at least we can try and find out how to make life easier for him, as he seems intent on making it as difficult for himself as possible.

[AntiquityOverShares]

You could have a look at the autism triad of impairments and see if your son maps onto it. However, I would say there are enough issues in your post to suggest there is something going on, social problems, rigidity of routine, difficulties with transition, sensory issues. What you don't want is your child to be labelled as a naughty child if his issues stem from a medical condition.

I have a 4 1/2 year old child with autism and half of what you've written describes him.

There's also no point in comparing him to other children because the things that are difficult and provoke anxiety in him he is the one that has to cope with that. Just living a normal life is hard work for my ds but at least with a diagnosis he will eventually know why as well as get help along the way.

[AntiquityOverShares]

In fact re-reading there tons in there like my ds and the level of supervision he needs both at home and especially out and about means he's been awarded middle rate care of disability living allowance.

[19991234c]

Is the OP still on mumsnet ? Found this thread on a search and wondered if there’s an update if your son got a diagnosis , sounds exactly like mine.