At what age is a child usually diagnosed with asd? When did you notice differences?

[Splandy]

Hi everybody, you'll have to excuse my ignorance - I have no knowledge of any of this but am becoming quite concerned about my baby. He is going to be one in a few weeks and his development doesn't seem right to me. I've avoided comparing with my first baby until now, thinking that they're two different children, but the differences by this age are now very obvious.

I've realised over the past few days that he doesn't really attempt to communicate at all. He hasn't said any words yet, doesn't gesture, no pointing, waving or clapping. He is a classic 'easy baby'. He's incredibly quiet, though does do baby babbling. He will copy a few sounds if I do them, but nothing word-like. He does react to his name and to the word 'no', but nothing else. He doesn't like other people very much and his favourite thing to do is sit alone and leaf through books. Thinking about it, he's never attempted to get anything across to me or give me anything. Other 'red flags' I've read about seem OK - he smiles, laughs, reacts to my facial expressions etc.

I know it's very early days yet, I suppose I'm looking for a bit of reassurance or similar stories. My first port of call will be to contact the health visitor. He didn't 'pass' the communication or personal-social areas of his ten month check and they told me to contact them if no progress was made within six weeks. He doesn't seem to have progressed at all for months - still seems very much like a young baby compared to other children his age.

Is the health visitor a good place to start? Mine hasn't filled me with confidence so far, she gave me some really bad advice at our first visit and they've recently made a cock up and clearly mixed up my records with another family's, so I'm a bit wary.

Any advice is appreciated. Thanks.

Your concerns about communication and interaction are both understandable and valid. No one can predict now whether it will necessitate long-term strategies or whether it's a temporary blip that you'll look back in a year's time and shrug your shoulders at. It's always best to push forward with referrals as lists can be long and you can cancel if no longer needed.

It's good your HV is responsive, but also don't feel like you can't request onward referrals to a paediatrician/SALT rather than just waiting and seeing under the HV service alone.

It may be worth looking into the availability of makaton courses in your area. Also consider private SALT - this can be expensive so I'd be ensuring they have the relevant experience for a 1 year old.

To answer the question in your OP, with DS1 by 18 months I was concerned at the lack of response to his name, loss of a few words. Told my HV when he was 22 months who referred on to SALT and Paed. We then got a bit lost in the system, but he was referred to a multi-disciplinary assessment when he was 2.9 and dx at the assessment aged 3.2.

From newborn he was late with social smiles, he did clap early and point by a year but in hindsight the joint attention and communication really wasn't there then. He's now 11 and life on the whole is pretty good.

Hey Splandy, my concerns began about 14 months, but in hindsight there were signs earlier, not answering his name, or turning when people came in a room, and not understanding simple commands were all there before. He was a very content little chap and I know now that was part of it, he had no aspiration to be with people really, he would smile when people spoke to him and he laughed at funny stuff and loved, loved the TV, a bit too much I now see!. He wouldn't follow a point or look at what I was looking at. Which is 'joint attention' and is a key attribute needed for language and communication and is so often lacking in children with ASD, At 16 months he lost the few words he had and I now know that a regression of language can only be ASD, there's no other disorder where that happens. As others have said, just plough on as you are asking for referrals, it may ( and hopefully) come to nothing, but they will do very little whilst he's so young, but once you hit 24 months they take it a lot more seriously, and if you've had your hearing and sight tests ( standard first ports of call for development concerns regardless of prior results or direct concerns) then things can move alot quicker if they need to. My area will not diagnose until 31 months, but DS was 31 months and 5 days when I walked into the Paed office so they were able to diagnosis there and then without waiting on all the stuff they need if that's makes sense?! If we'd just started then it would've been another year I think and early intervention is key. Don't panic, don't stress, and don't over Google but do trust your instincts and don't be bullied into not pushing on, just to be on the safe side. Good luck and big hugs xxx

Splandy, these were our concerns:

No showing
No pointing
No waving
Lack of response to name
Babbling, but not used to communicate
No gesturing
Not very much eye contact

Luckily my husband had the same attitude as me and after discussing we agreed a date that we would contact the GP if he hadn't made any progress.

From our recent assessment I know that SOGS is the Schedule of Growing Skills, and it's used to rate children's development in different areas. My DS had his social/communication skills rated to be in the 8 month range at 16 months, which was hard to read! But we're in the system and things are moving.

Hope you're okay today.

I noticed stuff for a young age. My DS is also autistic and diagnosed at 10yo.

The roller coaster of emotions is extremely difficult.

But you know what? He's your baby and whether there is developmental issues or not you'll forget your own relationship, life style patterns and learn a lot together as he gets older.

Ds has taught me more about compassion and compromise than I think any of my friends with nt children have learnt. I've also learnt to listen to him - and I mean really listen rather than hear the words.

If you have concerns and don't want to go through HV can you contact local home start or sure start and ask their advice. You can also discuss your concerns with your GP and ask for a referral to a developmental paediatrician.

Ds has taught me more about compassion and compromise than I think any of my friends with nt children have learnt. I've also learnt to listen to him - and I mean really listen rather than hear the words.

^^this

I know it's a terrifying prospect, but even IF it turns out there's an issue, he's still your lovely baby boy, and even though it can feel like everything changes, nothing really does, not the way you love him. X

Worrying about is he/isn't he is horrible, I do feel for you splandy

But as others have said, IF there does turn out to be something amiss, it's great you're on it so early. I had my worries about my ds at the same age (I remember obsessively googling about the time of mmr so c13months), but I stuck my head deep in the sand and it wasn't till he was over 2yo I faced up to it. And even then it was well over a year before DP would accept anything at all. Ds was dx at 3.6, and we'd started intervention (ABA) by that time already as I didn't need to wait for the paed to confirm what I knew deep down - and for us, what was key wasn't so much the diagnosis, but getting him the help he actually really needed.

As a pp said, if you find yourself in that position you are doing great that you can already get all the hearing test and "wait and see" stuff out of the way so early.

Have a look at stuff you can do now to help his interaction and non-verbal communication - look at positive reinforcement/behavioural therapy, Hanen (more than words), and also look at floor time, scerts, and DIR therapies - all very worthwhile whether ASD or not tbh!

And be very kind to yourself. It's a worrying thing, and hard not to obsess over every little thing, but try and do what makes him happy, and have as much fun with him as you can.

Fwiw my ds is coming up to 10yo now, and a thousand miles from what I thought he'd be

Realised I hadn't given any info you'd asked for about symptoms! At 1yo ds didn't respond to his name. He clapped and waved (his copying has always been ok) but didn't point till 15 months. Didn't interact in the back-and-forth way that was so vivid in dd from she was about 8 months. Will try and post more later.

SOGS= schedule of growing skills, its not actually a bad place to start, for DD these showed her communication/ hearing over time did not progress whilst visual skills were a few years ahead at 3. They were a good history when it came to asd assessment.

In retrospect dd was not interactive the way the other two were at one, they sought attention in public with smiles/ waves or even acting out. She was very passive, she didn't point, was overly reliant on being always on me, didn't show interest in other babies... this I could guess in some be character/ delay. DD didn't smile until way after the 6 week check. She did though sing, not the right words but whole songs at 18 months but she still didn't use any word despite a mama sound. It was the disordered nature of her communication that worried me, more than the quality. Now she knows a great technical range, but not some everyday words like sofa or blanket.

It always an understning delay, speech sounds are great. We've found we don't fit in to anything SALT has to offer. We tried a few groups but it was all interactive boys (or EAL!) playing we poor speech, she was rabbiting on in the middle of it and parroting staff who wondered why we were there. They didn't see she followed no instruction, whereas others would look when called, hand over toys or come to sing.

Thanks for all for the responses. I can see that there is a huge variation in symptoms. Feeling a bit like I want to ignore it today, but it's constantly on my mind. I feel really down about it all. My husband can't believe my reaction, says that I always convince myself of things and act as though it's the end of the world. Even having to consider that there could be something wrong is a huge thing for me to get my head around. Why wouldn't I be upset by this? I feel like I'm now spending all of my time watching him to see what he's doing, how he responds to things. And my husband is subtly doing exactly the same thing and trying to prove me wrong. It's all so ridiculous and making me feel worse. It might turn out that there are no issues and he catches up. And if not, it'll be quite some time before anything happens.

There is an atmosphere in the house because my husband doesn't agree with me. He claims that I am angry because he doesn't agree with me. I don't care at all that he thinks there may not be an issue, but I feel very unsupported. I'm a little bit ill at the moment, nothing serious, but he came home last night full of sympathy for my very mild cold, and as soon as I mentioned how worried and upset I'd been, he became cold and withdrew the affection. Told me that a colleague had told him I was worrying about nothing because her niece didn't talk until she was four and she was fine. He told his nan today who told him it was 'stupid' and he was clearly fine.

I'm really angry that these people, one of whom has never even met my baby, have the nerve to tell me that my concerns are wrong and they know him better. The health visitor wouldn't be booking him in for tests if she thought his development was fine. I desperately don't want anything to be wrong, and I now feel that my husband and his family will be smug if everything turns out ok because they knew better than me all along. I pointed out that my husband's nan doesn't see him very often. He said that she used to work with children, so she knows. She was a social worker in the 70s and I'm pretty sure any training she did receive on this kind of thing at the time would no longer be relevant. She is a lovely lady but she is in her 80s and has all of the opinions that are typical of a person that age. I took my husband onto that link for the talkingpoint page, which has a little progress checker, to try to show him that my concerns weren't just things I was making up. He argued with me over whether to say yes or no to some of the items, claimed that I was wrong. I am a stay at home parent and spend all of my time with the baby, but he expected me to believe that the baby has done things to get his attention and it's just bad luck that it hasn't happened when I'm around...

Just feel so bloody angry - I'm feeling sick with worry about my baby and it's turned into some sort of contest where people can tell me I'm wrong and they know my baby better than me.

How did you all cope during the period of not knowing? Did everybody else feel like this too? I only called the health visitor yesterday and it's already causing issues!

Gosh, that was an incredibly long post. Thank you so much for all of the information and encouragement. I've read through the thread a few times and found it has made me feel much better when I've been worrying.

All I can say is I had similar response from my husband, relatives and friends when I first raised concerns about DS1. It was bloody awful as by then he had quite a noticeable speech delay that they would comment on but then in the next breath recount a tale of Bert's former neighbour's 2nd cousin twice removed who didn't speak until she was 6 but she is now Queen of the World.

I won't deny it caused tension; H was being defensive, most of the others were trying to do that well intentioned glass half full stuff. I don't think they meant to be as patronising as they were. So i stopped talking about it (not advising this btw).

When we actually got seen by SALT, H had a total turnaround and when DS1 was dx no one questioned it. I think it helped he was at the home visit the SALT made, as it really laid DS1's issues bare and she was also honest in her professional opinion.

As for your H if he is so sure there is nothing of concern, the assessments are all play based so completely harmless so why resist them? Is how I framed it to my H. (I wouldn't have let him stop me but I found that pressed pause on our circular argument).

Not sure if that helps! But hang in there.

Didn't want to read and run. You sound so anxious and upset. I'm in a similar position of uncertainty but a bit further along the process and I just wanted to emphasise the advice given above to enjoy your DS on his own terms and not to worry. Try to appreciate his own wonderfulness as much as you can and just enjoy playing with him - those games are probably the best intervention you can do at the moment.

My situation is that DS2 is 31 months has only one word and the paediatrician has suggested possible autism although it will be a long wait for a formal assessment and we're not in a rush as we want to see how he develops. Like your DS his social communication is very delayed and he isn't particularly interactive. He can engage beautifully on his own terms when he's being cheeky or wants something but doesn't do any "chit chat" kind of interaction where he checks in with me or pays attention to me, he doesn't copy me, he has never responded to his name and doesn't understand "no" (so your DS is well ahead there!) and the contrast with his cousin (6 month younger) is startling.

In terms of when he first appeared different, he was a smiley interactive baby but at 1 he became more self-absorbed and showed less interest in what we were doing. He has always been super easy going. He started to point and wave at about 19 months. He can communicate perfectly by gesture what he wants but just doesn't seem to get the concept of him using language (although he has a decent understanding).

I think there is a lot of negative publicity about ASD. Before reading up about it, I thought it was all about the stereotype of children who displayed no emotion to their parents and were locked in their own worlds. Obviously some children are very badly affected but DS2 (and from what I've read on here many other children) is affectionate, cheeky, and tons of fun to have around, he just has some challenges in reacting to his world. You therefore need to put out of your mind any pre-conceptions about what children with autism are like and concentrate on your DS on his own terms.

Have a look for the More Than Words book and I also liked Stanley Greenspan's book on Engaging Autism which suggested ways to connect. I would have thought all these techniques would be generally beneficial in any child's development. Don't panic about needing to engage in some super-intensive programme - do a little bit of reading and make your own mind up about what is best.

The not knowing is a horrible time. That was when I really struggled the most, and some days sobbed like never before.

It is really hard that as parents, DH and I (and you and yours too) have to go on our separate journeys to get our heads around things. It helped us a lot to get some couples counselling after the diagnosis, to get our communication going again, as certainly I was very hurt by what I (probably unfairly) felt as DH's lack of support.

My DM was adamant that DS was fine. And actually, he is fine (better than fine, he's awesome). He does have ASD though!

As a very wise friend said to me shortly after DS was diagnosed, it isn't a tragedy. But it can feel like it is when you're in the middle of the is he/isn't he and getting your head around it phase.

I manage my worries/guilt by thinking about what is a reasonable thing to do (e.g. getting good advice about something specific, and then deciding what to do), and then I know that I have done my best and accept that while it may or may not work, that is all I could have done.

My husband is still in denial that our DD has ASD. She's 8 now! He does of course realise she has "issues" but swears its just speech delay. I have given up. I have instigated all the support she needs and will continue to do so. Some men just can't accept there's anything wrong with their children.

I haven't read the whole thread.

But step one for me would be to get the hearing checked. As a child I knew a little boy whose profound hearing lose wasn't up until he was about 5. As kids we just thought of him as quiet.
I probably wouldn't mention anything else except maybe to medical professionals until I'd had that checked.
If the hearing is fine (and get a proper audiologist check at the hospital not just a Health Visitor clicking). Then ask for a referral to a paediatrician, if you are still confirmed.

Often father's are in denial, and sometimes family members can be quite negative but sometimes the same family members who themselves who show the most ASD traits.

These fact files might be worth looking at.

'Introduction to the Fact File for Early Years
The Integrated Therapy Service for Children and Young People in Somerset Partnership NHS Foundation Trust has designed the Fact File for Early Years to support professionals who work with all babies and young children aged 0 – 4 years, in order that they will have a greater understanding of young children’s development and the ways they can help them and their families.'

www.sompar.nhs.uk/media/1910/fact-file-for-early-years-final-2-111012.pdf

I was knew something wasn't right at age 2and we were sent on the hearing test/glue ear trail. Knowing what I know now, signs were there under 12 months (no pointing). Speech & Language people seem to have the best handle on things. Self refer to your local service and they can help with onward referral if needed. We asked a private paed and got really bad advice which delayed us seeking help for a long time. DH was in complete denial an it caused lots of friction even up to this year when first we had a sensory OT assessment which confirmed lots of physical things which DH had told me I was imagining. I think it was a bit of a shock for him. Then we got the diagnosis (age 7) and DH still says things like "if that's the correct diagnosis". It's annoying frankly but not uncommon as a husband reaction from what I can tell! You have nothing to lose from getting assessed - I wish I'd understood that. We lost years of access to services doing a "wait and see" and I regret that now. Good luck and don't worry

The not knowing is very hard. It can make you panic. The unknown is always worse than the known.

But you know what? Your baby will only be this age once, will only be that lovely bundle for a short period. They will grow so fast. If there is one thing I missed for a while, in that 'unknown' period, was just to revel and enjoy my child.

Even if your child is ASD, they are still growing and discovering the worse, don't miss these golden months and years!

Whether a child has ASD or not can feel like a huge mountain, and ASD becomes the focus and not your child.

For me, I did think something wasn't up around 15 months onwards but no one, partner or health professionals, wanted to believe it, diagnosed at 3 at my insistence privately. However it could have been other things, and 1 is very young. The good thing is, that whatever your child has or hasn't, you are going to keep an eye on it and if it is ASD you will eventually get your child diagnosed very early.

So you do have time on your side, honestly. Any early interventions like ABA or SALT still have quite a long time line to have their best impact. My child didn't have any interventions until 3 years, but I still do think this was early enough for a lot of the main language therapies.

Discovering the world, not worse!

Hi I'm going trough assessment with my son 3 1/2 I new there was something at 1 and 1/2 but looking back now the signs were there health visitor has been regularly visiting my son since 18 months due to concerns in his development we went speech therapy and had behavioural interventions so have done everything possible to iliminate other causes it could be . Over 2 years of observations from the HV she is certain my son has ASD and has done everything in her power to get us seen quickly and with all observation notes documented. It takes a trumendous amount of time and it's horrible not knowing when you can see something is not right. He is still very young but if your not happy with they way he's developing just be consistent and suggest to your health visitor to visit it every month or 2 s she can witness the behaviours and the developement for herself. It's all more evidence to take to an assessment.
My HV has said that referring to nerolagist and chams and kadu can only really be done at around 3 they prefer to wait till then as traits and social skill are more developed. When my some was 18 months he sort of complied with her by 2 1/2 just ingnored her mainly but stayed in the same room, now the miniute she walks through the door he's in his room for the whole time she's here as he will just avoid the social interaction. Although it's been a massively long wait she has seen the regression in his social skills first hand.
Good luck with your little one, x

My dd is 8yo and i have known since she was around 2, if not slighty before that she was different (don't like saying different) than my other NT children.
First of all her speech was severley behind her peers, the health visitor was practically useless and focused more on my other dd at the 2 year check

Her milestones were average tbh, but verbally and educationally she has always been behind. Her behaviour can go from quiet to absolutely off the scale.
She displays somewhat odd behaviours, since as far back as i can remember. And is considerably socially akward. She doesn't underdtand her own feelings or other peoples. She makes stimming noises whilst consintraiting and has little to no eye contact on most if not all occasions.

She has an EHCP in school, this took me years of badgering the SENCO and took 2 years of gathering evidence before we finally recieved it last Winter. She is behind in school but very gifted in Art & Maths and is a very humerous little girl. She behaves perfectly in school but melts down at home and gets most of her frustrations out directly as we come out of the school gate or in the home.

We are currently waiting to hear about her being assessed (very long waiting list) for ASD. We have seen a doctor who referred us to a paedertrician of whom could see traits straight away. No eye contact during session and constant stimming noises whilst playing with toys in clinic. So i'm hoping to be on the path to finding answers.

It's the not having an answer that gets to me sometimes and for many years i thought it was more in my head than anything else after countless teachers rolled their eyes when i mentioned Asd. But with friends and family also now on my side i know that it isn't just in my mind and i'm not going mad! And i have finally made steps to find out whether she is on the spectrum!

Hardest thing is that girls imatate others so it's harder to recognise than in boys.