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Advice, handholding and positivity needed - think my 3.5 year old may have Aspergers

(28 Posts)
Dangermouse1 Sun 03-Apr-16 21:21:50

Hi all,

I've been lurking around the SN threads for a while and have finally plucked up the courage to post. I've been worried about my 3.5 year old for a few weeks now. He has always been a bright, happy little boy and I've never had any concerns about his behaviour, but recently his use of language has started to worry me and this has made me notice other things I had previously dismissed as just typical toddler stuff or his own little quirks.

He started speaking early and has a very good vocabulary, particularly for nouns, but recently I've noticed he doesn't seem to understand language that is in any way abstract or expressive. For example, he gets confused by open questions like 'what did you do today?' and will often not answer or say I don't know. However, if you break it down into a series of smaller questions like 'did you play in the garden?' 'what did you have to eat?' he is able to answer these fine. He also gets confused between certain things like which meal is breakfast, lunch and dinner and has difficulty understanding or talking about emotions.

He knows all of his story books off by heart and can 'read' them to you after listening once or twice. He has also started reciting story tapes and TV programmes - this will go on for ages, and when he is doing this he will often ignore you if you try to speak to him.

He has good motor skills e.g. can ride a bike without stabilisers, do a forward roll. In some ways his fine motor skills are good too e.g. very good with lego, but he also seems to avoid certain activities e.g. drawing / crafts, playdough and sometimes doesn't want to feed himself, particularly if tired.

I've always thought his behaviour was ok but recently I had a lightbulb moment that he has few meltdowns because we actively parent to avoid these e.g. give warnings when he needs to stop an activity, try to avoid stopping anything halfway through etc. When he does have a tantrum / meltdown they are quick to escalate and then he takes a long time to calm. However, he does seem to learn from them e.g. we had a big stand off about getting himself dressed (is capable but couldn't be bothered) and now he dresses himself every day with no problem.

He loves going out and playing with other people, particularly children and has always seemed to get on well with others. But he does sometimes have difficulty sharing toys, particularly his own. There are lots of other little things but hopefully this gives an idea.

He goes to private nursery part time and they have no concerns at all but have said they will ask their SENCO to observe him while he's there (although out of the house many of these behaviours are much less marked and he's usually impeccably behaved when outside the home). I've also booked an appointment to see the health visitor. But while I'm waiting for both these things to happen I'm driving myself and my DH round the bend looking at things on the internet and second guessing. My emotions are all over the place and I'm finding things hard with DS as everything he does I'm now over-analyzing.

I would be really grateful for some advice on what I should be asking at the HV appointment, what the next steps might be and if there is anything positive I can do in the meantime - for example any books that others would recommend that might help me help ds with the language / meltdowns regardless of what might be causing them. And maybe a stern talking to that whatever it turns out to be it isn't the end of the world.

Sorry its so long but its helped to get it out there. Thanks in advance.

knittingwithnettles Sun 03-Apr-16 22:08:14

I have a son with Asperger's, only diagnosed at 8, and tbh your son presents as far less "aspergery" than mine was at that age, and I DID NOT have any concerns (in fact no concerns till he was about 7) I think you may be unnecessarily worried? I have another son with dyspraxia and he was less good at expressive language or socialising than yours seems to be. So I am not a professional, but it doesn't seem like he is out of the normal range in many aspects of development. Again the dyspraxic one would fixate on programmes and phrases, but he had none of the motor skills your son seems to have, and still cannot do a somersault. The son with Asperger's liked arts and crafts in nursery although he doesn't like them much now. Is your son's dislike of playdough sticking because he doesn't like the feel of the materials or perhaps just because he has other things he prefers doing and is good at?

Children of that age DO have meltdowns (and my son with Asperger's didn't actually have any, it was my NT daughter that did)

I would be more concerned about sensory issues which you are NOT saying he has, and repetitive behaviour patterns, avoidance of certain textures or foods, to an unusual degree. Hypo or hyper sensitivity to certain things (my son hated having his head touched but loved cold water shock and swimming)

There's a lovely book called the Out of Synch Child has Fun which is full of activities to encourage a child - take a look at it, if you feel uneasy, you might find your son benefits from them - lots of blowing bubbles, crawling through tunnels, carrying heavy loads like toy wheelbarrows.

knittingwithnettles Sun 03-Apr-16 22:13:04

A 3.5 year old might not have the dexterity to do crafts or drawing. Colouring in with pencils and crayons might not be something that develops till much later. Painting is much easier for most pre-school children than drawing, at an easel. Some children are not ready to hold a pencil at 4. Tripod grip might be something to ask HV? I think that is the phrase. I think you will find the HV really doesn't have any concerns. Mine didn't, anyway...confused although son was referred to SALT for dribbling at 3.5..

knittingwithnettles Sun 03-Apr-16 22:17:06

I may be overly invested here, but I think it is very important to enjoy your time with ds while he is little; my best guidance if he does turn out to have Asperger's is to think

Transitions - prepare for them, and explain them, and allow time for them
Routines
Overload - avoid doing too much in one day or moving from one activity to another too rapidly
Nature - as much of it as possible!
And most important! FUN, on his terms

Dangermouse1 Sun 03-Apr-16 22:25:31

Hi knitting, thanks for replying. I know i may be overreating but i have a gut feeling something is off and his behaviour seems different to other kids we know. Among the things I didn't mention are some which could be sensory. For example hates having his hair cut to an extreme degree (although can now tolerate if watching tv), doesn't like being touched / hugged by anyone but us, and prefers to instigate himself. Until recently would not sit in the bath and screamed having his hair washed (but OK now I use very warm water), also won't go all the way into the swimming pool (has taken months of work to get him to paddle to waist deep). Had a period of head banging as a toddler although has grown out of it. Will not wear a jumper although OK with a zip up hoodie but will only wear outside the house. Obsessive about having his slippers on at all times and fiddles with them. Doesnt like loud noises. All very toddler type behaviour and didn't worry me much til recently but it's putting it all together.

He also gets very upset if we change any of his mini routines (e.g. must be the one to turn the bath taps on), although oddly is not worried by larger change such as visiting friends overnight.

I will check out the book you recommended.

Dangermouse1 Sun 03-Apr-16 22:28:30

Just read your last post and you are so right! I'm aware that I'm ruining the here and now with worrying. DS loves the outdoors and so do we, I think his behaviour improves so much when he's active.

Smartiepants79 Sun 03-Apr-16 22:36:09

The language issues you describe also sound very normal. My DD is a similar age and she would struggle to answer such a vague question such as 'what did you do today.'
You know him best so you must do what you think necessary to put your mind at rest but none of what you've written is outside of what I would consider to be normal toddler behaviour. I would also suggest it might be too early and he is too little to really be able to know.

Dangermouse1 Sun 03-Apr-16 22:52:38

Thanks Smartie. I think what worries me isn't so much the level of his language as the lack of development of it or even going backwards. If he had been later to talk or had less vocabulary to begin with I wouldn't be worried IYSWIM. But he seems to have had this level of language since he was 2 and it isn't really changing.

zzzzz Sun 03-Apr-16 23:29:17

Nothing you have written screams ASD to me. It's hard because most ASD behaviour is normal toddler behaviour so it's all about degree and duration.

I suppose the thing to ask yourself is what would you be doing if he did have ASD that you aren't doing now?

As far as what it's like if he does have difficulties? I have 2 children with quite severe difficulties, and we are happy and enjoy our life.

Meloncoley2 Mon 04-Apr-16 05:14:25

You could ask the HV about a referral for a Speech and Language Therapist appointment.

UrgentSchoolHelp Mon 04-Apr-16 05:30:27

I can see that some of those tendancies could be HF ASD traits, but it could also be normal. I agree with zzzz about severity and extent being important to determine which. I wouldn't worry too much, but there no harm in getting a referral.

WhoKnowsWhereTheT1meGoes Mon 04-Apr-16 06:59:28

I think there's no harm in asking for a referral to speech and language therapy, but from my own experience and what you describe it may be of limited help at this stage, most likely told to watch and wait. My DS was diagnosed with AS and dyspraxia aged 7 and the signs were definitely there (to me) before he was 2. We were lucky in that his nursery did pick up on it and get help from the local children's centre and the earlier you start any interventions the better. I went through what you are doing, trawling the net endlessly and over analysing his every move. It's hard not to worry yourself sick when they seem different to ther children. I would say that even if you don't get much help from HV, SALT etc now, if you continue to be concerned it will help you if he is already "in the system" so to speak.

PolterGoose Mon 04-Apr-16 08:21:14

Danger parents (usually mums) are almost always right when they spot developmental difficulties. Nobody on here can or should tell you not to worry, conversely nobody here can tell you for sure. But if you think there's something you should follow it up.

The problem at this age and with a more 'subtle' presentation is that it's easy to have concerns written off by others, I regret not following up my concerns sooner and instead reaching crisis before anyone took me seriously. It's also really hard to fully articulate all those little niggles which actually add up to something 'more'. My suggestion is read loads, take notes, keep a diary and keep having fun and use his interests to develop skills. If you can get yourself taken seriously pursue assessment, ideally you need someone on your side, for me it was a fabulous HV who was extremely supportive and believed me when nobody else did.

Good luck and keep posting flowers

Dangermouse1 Mon 04-Apr-16 08:35:30

Thanks everyone, you are really helping. Polter you have described it perfectly - none of the things he does individually concern me at all, it's putting them all together and it's like I'm doing a really complicated jigsaw. I keep thinking of other things I missed out of the OP like he has quite bad separation anxiety and struggles being dropped at nursery but is always happy on pick up and they always say he's been really happy all day.

I agree with your thinking that if I get something documented now I've raised my concerns then if he starts having more problems say at school I can refer back.

Zzzz I guess that is my question - should I be doing anything differently? Do I push him to stop/limit some of the behaviour (like the endless reciting TV and stories) or will that impact negatively, whether he has ASD or not? Everything I read talks about early interventions make all the difference, but not what they are and if they are still suitable if he's borderline or actually doesn't turn put to have any issue. So that's probably the advice I'm after - if HV says wait and see (which is quite likely as it is all v subtle) how do I go from here? Also needing to make decisions on preschool./ childcare and this is all going round in my head too.

Dangermouse1 Mon 04-Apr-16 08:39:01

Sorry also meant to say I am open to the fact I may be wrong about what is going on but what I don't want to do is turn round in 4 years and say I was worried at the time and I ignored it.

PolterGoose Mon 04-Apr-16 08:50:20

For practical stuff have a look at these Fact Files, they're from my local integrated therapy (physio, OT, SALT) team and it gives you an idea of what the various services might offer, and has loads of practical help. They'll also help you verbalise your concerns.

zzzzz Mon 04-Apr-16 10:34:06

I wouldn't stop behaviours ruthlessly, but if they can be morphed into things that are easier to take forward then I would try to do that. The thing to realise is that echolalia for example IS normal it is just a briefer and more transient stage in some nt children so you don't notice so much. I think more damage is done by restricting stimming than by embracing it. I also think the message of "try to look normal" is really damaging.

I'm not really convinced that early intervention does produce the results people say it does if the cause of delay is intrinsic to the child not nurture, If you are asking me what I would do? I'd read everything I could and ask questions here endlessly. I'd employ the techniques that make his life easier and start the process of making inclusion the way our family think about disability. If you are at home I'd try to do swimming or dance or whatever once a week and watch how he manages in that environment so you can make good guesses at the problems he might encounter at home and so you have other professionals who know him. I'd look for a good (by which I mean real not just in name) Montessori Nursery and if I could afford it think about 3 mornings a week and finally I'd work hard at his relationships with the greater family so that he has lots of different adults and children to interact with who love and understand him and can be trained taught how to help.

If he isn't autistic you will have given him a bonza childhood, and if he is you will be well placed to support him going forward.

knittingwithnettles Mon 04-Apr-16 10:54:31

Also second zzzz suggestion of Montessori, if that is possible, ds2 and ds1 loved theirs, and they behaved beautifully, although other mothers used to refer to their nursery as The Stepford Wives as the children used to glide around serenely grin carrying little trays.. Ds2 only went to nursery in termtime in the mornings, that suited him very well, no tears or tantrums at all.

GoHome Mon 04-Apr-16 17:41:26

Take a note of every single issue that concerns you so you have a list whenever you do talk to someone.

I have a 6 yr old DS with aspergers and what you describe doesn't really ring too many alarm bells but obviously only an expert can tell as all children present differently and there are various conditions with over lapping symptoms that he might have.

I have a 4 yr old DS who has no issues at all - he's very sociable and engaged - but some of what you describe could apply up him - he get be very headstrong and tantrummy - but I'm confident it's due to his age. He will go ballistic - for ages - about something ridiculous - and eventually snap out of it. I am also always trying to parent my 4 yr old in a way that avoids tantrums - but it doesn't really work. My 4 yr old might grab toys off other children - but is improving a bit with this. He doesn't always like children who visit his home to play with his things initially

My 4 yr old would also do better if I ask a specific question - like 'who did you play with in school today' rather than a more vague question like 'how was your day?'.

zzzzz Mon 04-Apr-16 18:53:52

I tell you what might reassure you. If you have an ipad, could you down load a couple of autism focused/language apps and see how he does on them? I think you might be worried unduly by the language side of things (but again YOU know him and Mums tend not to over fuss, rather the other way round).

For early years Autism the Buddy Bear apps are good, for language try Inferences, and Question builder both of which give you a score which might be revealing.

Dangermouse1 Mon 04-Apr-16 20:37:24

Hi everyone, thanks for all the info. Polter the fact sheets look really useful and I can see maybe my expectations are a bit high around drawing type skills so I'm going to try some of the advice.

Zzzz he already goes to a gym class every week which he loves and is always well behaved although he bounces about a lot when waiting his turn and seems quite hyper.

The only thing I cant see any other explanation for is the echolalia. This can be quite extreme sometimes (e.g. if he's tired), we get whole sections of his favourite programme. I think it may be a stress type response or if he doesn't know what to say. Is there any explanation for this that isn't autism?

Anyway, armed with my new knowledge I'm going to write a list for the hv appointment, try dabbling in some of the support for language and motor skills but without putting on too much pressure, have fun with him and be patient (the hardest bit).

ConstantCraving Mon 04-Apr-16 20:55:25

Hi Danger
I'm a mum and can't diagnose but can offer you my experiences.
What you say about the early speech and good vocabulary, but inability to understand expressive / abstract language and confusion with open questions sounds so like my DD at 3.5 (and now still at 6.5!). She was diagnosed with autism last year but also has a specific language disorder. She used echolalia, spoke in the 3rd person, learnt all her storybooks by heart - and still does - and watches films over and over until she can recite the script. She also loves 'narrating' and describing and like your DS cannot be interrupted when doing this.
I'd recommend seeing a SALT - we knew that DD struggled to understand what was being said but because her speech and word use is excellent others didn't see it. When they actually tested her, despite higher than average scores for use of vocabulary and grammar she was on the 1st percentile for receptive / expressive language - basically her ability to process and understand information. She can't hold conversations at all, but at 3.5 years this was not apparent - now it's glaringly obvious.
Trust your gut instincts. I knew from early on that something was very different with DD and I was right.

PolterGoose Mon 04-Apr-16 21:09:26

Good echolalia article here

Crasterwaves Mon 04-Apr-16 22:31:22

Has he had a hearing test? My toddler with glue ear had marked echolalia.

Dangermouse1 Tue 05-Apr-16 17:38:15

Craster he had hearing test as a baby and no issues. He reacts to noises and is quite scared of loud noise e.g. fireworks, handdryers. I will ask hv but my gut feeling is hearing is fine. His prenunciation of words is brilliant for a 3 year old, would you expect less clarity of speech with glue ear?

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