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Out of my mind with worry about possible ASD

(24 Posts)
ICSH1 Sat 27-May-17 17:18:00

Hi everyone,

We don't yet have a diagnosis of ASD for my 27 month old but I've started the ball rolling with a hearing test with plans to push for more assessments. No one seems to agree with me that Jude could be ASD and I just wanted to check in with some people who actually have experience of children with this to see what they think. Is that ok?

Jude's main issue is speech delay. He has a decent vocabulary (which we know from the words he uses when he points to pictures/ tv etc) but chooses not to/ can't seem to use it to communicate. He will call us by name (mummy/ daddy/ Freddie/ nana etc) to alert us to things but won't follow with a word. More often than not he'll hand us a cup for a drink, shoes if he wants to go out etc or he'll point or take us by the hand to what he wants or moan. He'll repeat things he's heard on tv (though not always perfectly) and will sometimes come out with random phrases (like this morning watching his brother play football he shouted "come on Freddie!" Or he's pointed at Freddie's cycle helmet and said "it hat!" Or if I blow hot food he sometimes says "it hot". We also get quite garbled attempts at "there you go" and "all gone". He waves, often says "bye" or "see ya,bye", has great eye contact and is the most affectionate socially confident boy. He is happy to read alone for short periods, will run around the garden without company but equally likes us to be with him. If his brother is around he's always pestering him to run about with him. He plays- though he prefers books he plays on his telephone and drives his cars round his garage. He 'reads' social situations well- he knows if I'm mad (he'll cry) he knows when his brother is upset (he'll cry!) he knows when something is funny. He also seems to understand instruction- if I say we are going out he'll get up and get his shoes. If I say "bathtime" he'll head upstairs (unless he doesn't want to go!) if I say "food time" he'll head to his high chair...he eats and sleeps like a total champ. Never had any issues with that. Also doesn't seem to need routine and not daunted by new environments.

I'm not sure if I'd be quite as worried if it wasn't for the speech issues- he doesn't have any of the other behaviours I've seen flagged for ASD but he seems to like fences, he often heads for them and runs his fingers along them?! He does also have terrible tantrums if he doesn't get his way (but with a dummy or snack or doing what he wants they quickly stop) and he doesn't always seem to pay attention to us if he doesn't want to (sometimes I can't tell if he's heard me, sometimes I know he has because he smirks a bit!)

I don't know. I know there are many reasons for speech delay, it's just I've gotten myself into a complete state and I guess I'm looking for some reassurance or encouragement or something to stop me from going mad.

Thanks for listening anyway. I've got no one else to talk to.


Allthewaves Sat 27-May-17 18:55:17

Is he under salt? Ds was pulled up at 2yrs for major speech issues and salt pushed for asd diagnosis. Sometimes things only become clear as they get older

LightTripper Sat 27-May-17 20:09:27

I would go to see a Speech and Language Therapist if you can. In my London Borough they have drop ins almost every day somewhere in the Borough (suspect this is unusually good!!)

I'm no expert (we've been told DD is likely to have ASD but are waiting on a formal assessment in Autumn). Her language at that kind of age was also very good for describing things (e.g. In books) and she had good vocab, but she didn't choose to use it to get things she wanted. But in DDs case she had also been very late to point and wave (she still isn't a great waver at just gone 3 to be honest) and those seemed to be major factors in the concerns raised, along with the fact that she flaps her legs when she gets excited.

The thing that I hadn't understood and your doubting friends/relatives may not is that you don't have to tick lots of boxes on the red flags to be ASD, a couple can be enough if they are fundamental ones (pointing/waving).

It doesn't seem an obvious case to me, but I also believe that often Mum/Dad sensors are pretty accurate in telling when something is odd/different. It can't hurt to get it checked out, and it sounds like your DS has lots of great learning skills that will really help him if he is on the spectrum, so the sooner you know whether something is "up" the sooner you can find the right ways to help him develop any weak spots. But he may just be a bit slow and will catch up. I know here everyone seems reluctant to say anything too long before 3 as there is such a wide range of "normal".

ICSH1 Sat 27-May-17 21:07:25

Thanks ladies, that's already very helpful.

Jude's not under SALT yet but I'm going to push for that and will go private if necessary. It sounds so negligent but because his behaviour was so 'normal' and because he was developing words (and not losing any) I really thought that he'd just catch up. He has his 27 month assessment in a couple of weeks and I was going to raise it then. Honestly autism had never entered my mind. And now I've started looking into it I don't know if I'm seeing things because I'm panicking and misinterpreting or because they're suddenly becoming clear (or have always been there). What is absolutely obvious to me is that he needs some support in speech, I know that now and will get it for him. He's honestly so wonderful socially (much more so than my eldest who has never struggled with communication or learning) and so happy and affectionate with everyone I hadn't considered his communication to be part of a wider problem. I just feel so dreadfully sad for him, he's struggled with lots of chest infections and has been in hospital so many times, I just wanted him to be free of the rigmarole of interventions and doctors.

LightTripper Sun 28-May-17 00:19:54

It sounds like he is communicating though, just slower to do it verbally. I don't think 27 months is late to pick it up at all, please don't worry about that. It does sound like SALT is the place to start. It may or may not be ASD but as you say it probably doesn't matter much in terms of what your next steps should be. Hopefully he will just catch up and lots of kids do, but if not you'll have the support you need to help him as much as possible!

Honestly I still have days when I doubt my DD is on the spectrum and days when I believe she probably is. But in the end as long as I am doing what I can to support her development that is what really matters, and a diagnosis will follow (or not) in time.

ICSH1 Sun 28-May-17 06:34:51

Thanks LightTripper, you've been a gem and you're right Jude IS communicating with us and he's interacting with us just fine. It's just non verbal in the main. It gives me hope that even if he is on the spectrum that with some language support he and we will find ways to help him keep up/ stay comfortable with his peers?

Can I ask how your DD gets on if you have days where you doubt that she's ASD? Does she cope socially? Is she in nursery? X

readyornot2011 Sun 28-May-17 18:01:32

It doesn't sound like he has any signs of autism other than speech delay and even that isn't too severe.... I don't want to be dismissive but I'm in a similar position and I know how awful the worry is and I don't want you to go through it unnecessarily. My son is now nearly 3 we pushed for help at 2.5, he has been assessed and they admitted there were signs (I won't list them all here, you could look up my previous posts) My sons signs weren't strong enough for him to be diagnosed at this point but he is much worse than your son e.g. He still doesn't use our names appropriately and his 'vocab' is less than 20 words (tbh most of those aren't clear to anyone but use)..... and still wasn't diagnosed. Definitely see a speech therapist (although if it helps my daughter went from just putting 2 words together at 24 months to fluent conversation at 30 months) and mention ASD if you're worried.
For diagnosis you need the triad of communication/interaction/imagination delays and my son exhibits problems in all these areas... we are pursuing therapy with or without the diagnosis. I'd be delighted if my son had your sons skills by 3. Try not to worry

ICSH1 Sun 28-May-17 20:58:17

Thanks readyornot and I do hope I'm not offending anyone by posting this. I do appreciate that Jude is great in many ways. Socially I really have zero concerns. I can't imagine a more affectionate child, his eye contact is great, he plays well with others (not so much at nursery but definitely and consistently in other situations I've observed), joins in his music class and follows that well, he plays with a range of toys (books, his cleaning toys, his instruments). He points to what he wants and waves bye bye. He follows many instructions, not picky with food, not difficult with sleep, not fussy about routine. But now that I've started looking into autism I see how wide ranging the spectrum is and it's made me panic a bit about little things that I'd dismissed as 'just Jude'. Like the running his hands down fences/ walking around the edge of places. Not obsessively, not for long and not at the expense of other play but he will probably do it when we are out. He sometimes ignores us or seems not to hear (though equally sometimes I know he has heard and he's chosen not to respond). And he can have bad tantrums when he doesn't get his own way. I could easily explain those away- tantrums are typical of a 2 year old, if he's playing a game and doesn't want to go to bed then he will ignore us and as for the walking round the edge thing, his brother had plenty of quirks and it doesn't disrupt our day/ take over/ there's absolutely no compulsion. It's just if you add that to the speech delay do you get something else? I'm hoping not. In my heart I feel like it is just speech delay and I feel hopeful that with the right help we could get there, I just want to be prepared...and yes, dismissed- id like to be hopeful that he's fine!

LightTripper Sun 28-May-17 23:12:32

With my DD it actually wasn't me who spotted concerns at all but our nanny. I still wouldn't have been worried today if it weren't for the concerns she raised. She was worried primarily that our DD wasn't using language to ask for things (e.g. at 2ish had never asked for a drink or a snack despite having very good vocab and descriptive language). At that stage paediatricians talked about passivity a lot but it was too early to draw any conclusions. Now at 3 she could hardly be described as passive and is very good at asking for what she wants but I do see that she still tends to play alongside peers rather than with and is generally a bit behind on her social skills. She does go to nursery and really enjoys it, but is much more comfortable interacting with adults than children. She was very late to point and wave, and definitely less mature in her social skills than most other girls her age - at least in the way in which she interacts with other children. She does flap legs and occasionally hands a bit when she's happy/excited. That stuff doesn't seem to me to be a problem but perhaps that's just because I'm so used to it, it's just part of her - it might stand out more to a stranger, I don't know. No problems with eye contact or affection: from what I've read it seems a bit of a red herring to associate either of those very strongly with ASD.

I don't know what to think really, but the paediatricians have referred her to the complex communication clinic for assessment and gave us a strong steer that they think she is likely on the spectrum at our last appointment, so I have to take it seriously as a possibility at least. However, on days like today when she is hanging out with us and her grandparents and playing board games with us (happily taking turns and taking pleasure in other people matching their bingo pieces and not just herself) and showing them her birthday presents and asking them to watch her dance or make her magic potion and generally being (mainly) delightful I find it difficult not to be optimistic for her, diagnosis or not. We are getting some SLT and light ABA support in the meantime to help work on her social skills with other kids, and then we'll just wait to see what happens at the clinic and try to focus on the here and now as much as possible until then.

I guess that is my general approach and coping strategy at the moment: focus on the positives, try not to obsess over it and make sure I let DD enjoy herself in her own way, but try to think if we hit trouble ahead is there anything I would have wished I'd done differently if we do get a diagnosis? I was a bit of a weird kid and didn't make friends easily. I put that down to not fitting in socially at the time, but looking back I can see I was always socially immature and was probably always lagging a year or two behind my peers socially. So I'm hoping she might just have a bit of that, and we can help her with it. But really we'll just have to wait and see how things unfold I suspect, and try to help her with problems as they arise, regardless of whether she is dxed as being on the spectrum or not.

ICSH1 Sun 28-May-17 23:58:17

Wow Lighttripper this truly is a spectrum then because aside from the not using language, I'm not sure I'd have thought anything was amiss in what you've described of your little girl. Jude wasn't late to wave or point- I'm not sure about his social maturity as such, just his social confidence and that's always seemed good. I feel very lost. I suppose I've always had a very extreme picture of what autism is and maybe I need to have more of an open mind that it's not the end of the world and that it can be a more subtle set of symptoms because the way you talk about your day, id be very happy with that. It sounds like your little girl and Jude are very similar and whilst I'm sad that ASD feels like a reality in some form I'm also hopeful as a result of what you've said. Thanks for taking the time x

LightTripper Mon 29-May-17 07:46:04

Yes, but then there'll be another day when she leaves a play activity as soon as other kids arrive, won't speak to say hello or goodbye or anything else to another child, and spends the whole of a music or Gymboree class playing by herself with balls and I think "Hmmm, maybe they are onto something". It certainly is a wide spectrum though, and I can see DD is at least towards the spectrum IYSWIM. I sometimes question whether she is far enough to be on it is all, but the experts will determine.

But 27 months is genuinely quite early to tell for somebody borderline, so try not to worry too much. But not too early to start to get SALT input I would say, and then you just have to see where you go from here! Best of luck with it anyway. I know it's stressful but sounds like your DS is doing brilliantly in lots of ways, so do hang onto that thought too, while helping him with the things he finds harder.

readyornot2011 Mon 29-May-17 10:41:35

Light tripper, your DD sounds very much like mine at te same age (I thought that on your earlier post too). We've never worried about her and she's never had any problems at school, She has her quirks as any child does but she's an easy loving bilingual 6yo. I guess it's possible she's on the fringes of the spectrum (although I would never have concidered it if it wasn't for her little brother) and I will certainly bare this in mind as she approaches her teenage years as I've read problem manifest themselves later in girls... but for now she's a delight (most of the time) by anyone's standards. So I think your right to be optimistic for your daughter

missadasmith Mon 29-May-17 15:44:36

have you looked at the M-Chat? just Google it. if his score is in the 'high risk' group, print it out and take it to GP to demand referral to a developmental paed.

a few things you said ring a bell for me (have a DC with ASD): having words but not using them to communicate. the telly talk (it is called 'echolia'). Btw - my DC has good eye contact, is affectionate and cool with change. Not saying that your DS have ASD but having good eye contact, being affection and having autism are not mutually exclusive. there are a lot of misconceptions about ASD about.

LightTripper Mon 29-May-17 17:45:59

Thank you Readyornot, that's really reassuring. I think she's pretty like me as a child and I did find the teenage transition difficult (and was very innocent and unworldly wise when I got to Uni, looking back) but once I found my "tribe" in each place I was fine and made friends for life, so I hope DD may be no worse than that. We'll see but it's encouraging to hear that somebody on roughly DD's path can still be doing well at 6!

ICSH1 Mon 29-May-17 18:28:35

I did the M-Chat questionnaire and came out low risk (only scored 1) which is confusing...

readyornot2011 Tue 30-May-17 15:26:44

Don't be confused be happy, your son may have some language issues to overcome but it doesn't seem likely he's on the spectrum

ICSH1 Tue 30-May-17 18:31:53

Oh believe me I'm glad it gave us 'low risk' it just seems to be quite a basic questionnaire for such a complex issue and I'm wondering how accurate it can be? It bears out my feeling that the heart of this issue is predominately a speech delay but the more I'd looked into ASD the more I'd started looking for other oddities and m chat doesn't seem to account for those. I just don't know if I'm being too sensitive or not sensitive enough.

LightTripper Wed 31-May-17 03:20:31

I think the thing is that many ASD traits are also normal toddler traits but unusual in quantity, or with a delay outgrowing them. So you may see lots of "traits" you can find on various websites without it being ASD. FWIW when I did an online MChat for DD when she was in the appropriate age range it came out as medium, despite me not being worried about anything - I guess because those questions, though simple, focus on the very specific distinguishing traits that the experts are looking for.

Great that your son came out low in any case, but I think you would still be fine to see a SALT to check out any stand alone speech issues and (hopefully) put your mind at rest about any communication difficulties.

Let us know how you go, I'm sure some future Google will find it very helpful to see how you go as the Internet is full of positive diagnosis stories but people whose mind is later put at rest tend not to feel the need to report back on the end of the story!

ICSH1 Wed 31-May-17 21:00:07

LightTripper thank you and thank you to everyone who has taken the time to share experiences and generally calm me down! I can't pretend I'm not still very anxious (Jude isn't very well at the moment- he has asthma and is struggling with the pollen I think so is very miserable) and I KNOW I'm being paranoid and looking at every little thing Jude does (things he looks at/ movements he makes with his eyes/ how much he looks at us/ how he runs/ what he says/ how he sits...driving myself nuts) just hope that moving forward I get some answers and we make some progress in his development x

ICSH1 Thu 08-Jun-17 15:17:19

Hi everyone, just wanted to let off some steam as Jude has been so difficult over the past few days. Epic tantrums almost exclusively over not being able to say what he wants or not getting what he wants. It's been heartbreaking 😢as they are by far the worst I've seen from him and I just don't know how to help. I've got his development assessment tomorrow (which I'm petrified about) and I've got him on the wait list for a audiology appointment. I've taken him to the docs this morning to have him checked over and she says he's got a cold with fluid behind one eardrum...

How do I help him? If he's not had a hearing test is there any point getting private speech therapy sorted immediately? He's always been such a happy little one and I'm in bits seeing him so distraught.

Olympiathequeen Sat 10-Jun-17 11:13:36

DS is 4 and at 27 months was at the same stage as your son. Very similar socially etc.

He's recently been diagnosed with glue ear and is having speech and language lessons. His receptive language is great but speech is pretty unintelligible to most people still, despite chatting away in great detail about subjects and with good imagination.

ASD briefly crossed my mind but having a reasonable idea of what it entails I dismissed it, as did the SLT and our GP. I would get a SLT assessment as soon as you can and the hearing test sorted out.

I would advise you to teach him makaton signs. Mr Tumble programs are great for this and there are resources online. DS still signs and that alone gives us a clue about his sentence so that we can respond appropriately. It cuts down frustration. Also look into PECS cards which you can place around the house. E.g. On the fridge door cards for yogurt, orange drink, apple etc to reduce his frustration levels.

Don't worry it's probably just hearing. Things are improving with DS but we may have to consider grommets at some point.

ICSH1 Sun 11-Jun-17 16:40:22

Thanks that's a super comforting post Olympiathequeen ❤️ Jude had his development assessment on Friday and the HV said that whilst his language scores were low they weren't the lowest she'd seen and his receptive language/ understanding seemed fine. She advised to look at Jude as a whole child and not just his language and she said based on what she saw in front of her she wasn't overly worried. She advised SALT drop in and hearing test and she'd follow up with us in 3 months. I felt somewhat reassured by that and today we've had more expressive language from Jude than I've ever heard! We've had "hello Marley!" (My s in laws dog- didn't even know he knew his name!) "mummy, juice!" "More!" It's crazy as obviously still nowhere near where it should be but amazing for him!

Olympiathequeen Mon 12-Jun-17 11:43:16

ICSH1. Great news but I was expecting something along those lines. Push for some SLT input. We've just completed a 4 week session (x4 lessons) with a speech team. It was informative and useful and made it all fun. Maybe a book with fun learning exercises for clearer speech? I've got 'teach me to say it right' which explains how speech learning works and has exercises. The SLT sessions concentrated on the commoner sounds and also clapping out the syllables. We've noticed DS saying the syllables of the word better just from that, although most everything still starts with G!

Also do the maketon signing, it does help with communication which in turn encourages verbal communication.

DS observed today that we need some very large blankets to cover the cars as they are getting wet in the rain! So I have no worries about his imagination and will keep on with the SLT and wait for the next ENT appointment with fingers x smile

ICSH1 Wed 14-Jun-17 14:35:29

Olympia thanks so much- will look up that book!

I thought I'd update especially because anxious mums who find themselves in a similar boat and are frantically googling might find it useful. We went to a SLT drop in this morning (not great as we had to wait FOREVER to be seen) and completed quite a comprehensive questionnaire. The therapist watched Jude and I play together and watched Jude play alone and asked me quite a few questions. Her assessment was that he is a happy and socially engaged little boy who is delayed in developing expressive language. She believes at this point that this is the only issue affecting Jude and that it is not part of a wider issue. She has referred us to a 6 week course called 'Play and Talk' where further observations can be made whilst also developing speech. We will do this whilst also getting his hearing checked and seeking private SLT support. She did say a very interesting thing about hearing- whilst we think Jude can hear OK now because of his frequent colds/ chest infections it is quite likely that he has suffered ear issues at important times for language development so this could be a cause.

One on one quality time talking and playing was mentioned quite alot and I have to say on the days where we can be on our own together (without his big brother who does tend to dominate) I notice big differences in Jude's language. Today I've had lots of "mummy, LOOOOOOK!!!!!!!!!!!! LOOOOOK!!!" at god knows what but it's been amazing to see him initiating conversation.

I'll continue to update as I know things can change and I do want to keep a record for anyone worrying about similar issues without a diagnosis.

Thanks so much for your support, it's meant the world x

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