Autistic traits at 16 months but did not have autism?

[HopefulMother1]

Hello mothers. My son is displaying a number of autistic traits. He does not point, wave or imitate clapping (well, only once he did), he very occasionally flaps, does not respond to his name often (although he does if he knows I am calling him for something he wants), and his eye contact is not amazing (it is on his terms usually) although it has improved in the last month since I started getting down on the floor and playing with him. Despite all these traits, I am aware that I have been working full-time since he turned 8 months, he hasn't attended nursery, and so has little to no interaction with anyone, nor did I recognise the importance of modelling. I am not expressive in body language myself and so my son has only seen me point, clap and wave in the last month. He also has not said any real words although he will occasionally say "ma ma ma ma" or "da da da da". He does babble although nothing I understand and not in a conversational way (back and forth with me).

On the positive side, he seeks me out and pulls my face to look into his eyes if I haven't for a number of hours, he loves peek-a-boo, and is super fast at picking up any toys he has to learn. He also walked early at 8 months. He plays well with peers his age on the few occasions he has had a chance to (follows them around), and looks strangers in the eyes before usually coming to hide behind my legs if they talk to him.

Has anyone had a similar story and found that their toddler turned out to not be autistic? My son is due to start nursery in a few weeks so I am hoping this helps. Alternatively, has anyone had a similar story and managed to help their toddler develop to be fully functioning. If so, how?

Any replies would be amazing. I'm going out my mind here.

At 16 months it's very hard to say because he is so young, especially if he has had relatively little interaction. I would wait and see what happens at nursery, that's all yo can do really - that and just enjoy him.

Thank you @Staynow. I am trying not to overthink things here and enjoy him. I'm not sure if those bleeding milestones are helpful or stressful for parents really.

You seem to know a lot about ASD. Is there. more of it in the family? 16 months is very young to be looking for a diagnosis largely because he might just not be doing things yet. An ASD diagnosis (if he has ASD) isn't of much value at 16 months. I'd see how entry to nursery goes and if their are friendship problems I'd ask for a diagnosis. If. he is autistic, I'd say the most important thing is to get SALT as early as possible. Temple Grandin has some good advice on this subject. You would likely have to pay for this privately. My ASD son is 11 and I wish I have known all you do when he was 16 months. I thought he had ADHD and took him for an assessment when he was 6. And I was shocked to be told he was also Autistic. Today, its fine. He's proud of who he is and he is so very smart. English is a struggle, but he's a brilliant little computer scientist.

Hello @TheStenchofTruth . Thank you for the advice. No, there is no autism in my or my husband's family, but because my sister had her child late in life, and the hospital kept banging on about the risk of this as a result, I've now become familiar with the signs. Her daughter is a neutotypical, but that awareness remains. My little boy has now started nursery, so we'll have to see how that goes.

Your little computer scientist sounds like a mover and shaker of the future. Thank you for sharing your personal, very reassuring, story.

Update: so I've counted the words my son can say and it is a total of 16 words. However, when speaking with a behavioural therapist, she said that the words he says do not count if he is copying someone else. It has to be spontaneous and unprompted - in which case he says like 3 words!! Can anyone verify if this is true? Also, the behavioural therapist said she will work with my son, but also wants to go into his nursery and work with them - which I am concerned about for three reasons: 1. I want to get unbiased feedback from the the nursery once my son has settled in, 2. I want to assess whether her methods work with my son first, and 3. How much will it cost to have her doing this at the nursery, perhaps with another tutor?! What do others think about this? Has anyone just learnt an approach themselves and implemented it successfully with their toddlers?

I have good days and bad days depending on how responsive and engaged my son is. Today is a bad day. I just don't know what to think. Many others keep pushing the 'wait and watch' line, saying I need to at least give him until he is two. However, I know waiting lists for intervention are long, and worry about if we arrive at 2 years old and he is much the same. I do wonder how many kids go from being detached to neurotypical by two for that to be the common approach taken.

I'll end my free flowing thoughts here. Would love to hear about others' experiences.

I’m copying a msg that I just posted on another post that was asking whether to bother for an ASD diagnosis if the child is getting on okay, but I thought it might be of interest to you:
I took my son to the GP at 18 months as he was exhibiting some of the autism “red flags”. He referred him to a paediatrician who said it was too early to diagnose. Then coming up to age 4 his preschool got an Ed Psych in to assess him and also recommended we go back to see the paediatrician - was told again by both professionals that although he has some unusual traits they didn’t see sufficient evidence to warrant a diagnosis. My son got on okay in Infants, working at or above in all subjects and having friends, though he had extra help for his handwriting and was pretty clumsy. Roll on to year 3 and his teacher suggested we go back to GP as his behaviours in class were impacting his learning, eventually seen by a doctor who diagnosed him with high functioning autism at age 9.
Now aged 10, his teacher has suggested we go for an EHCP and seek an ADHD diagnosis. I’ve gone back to the same firm who did the ASD assessment (NHS used the private firm to help with their backlog) and even going privately they are talking about 12-16 weeks for assessment. We are keen to get it done asap to feed into the EHCP process, if we went via the GP we’d be looking at 12-18 months or longer. Looking at the cost of these assessments I am so glad we got the ASD one when we did and are not trying to do it privately.

So, in short, when my son had his ASD assessment I didn’t think he would be diagnosed, but it was doing it as school felt it was worth doing. Now we have it, my husband is relieved as it explains so much, our son’s behaviour is not naughtiness or as a result of poor parenting, but down to his condition and the way his brain works. We understand him so much better now and have some useful strategies to help him (and us!) cope with the day to day stuff most people take for granted. We’ve been advised that although our son has been doing well at school (academically, not so much emotionally) as the curriculum speeds up in secondary he is likely to struggle more and more. Classes of 30 children just aren’t going to work for him and we are now seeking assessment of his needs (Ed Psych and Speech & Language) to understand what type of setting will enable him to thrive in education and not become a school refuser which we are starting to feel concerned about.
This time last year I didn’t think my son needed an ASD assessment/diagnosis but now I am so grateful that he has it and seeking more information to ensure he gets the support he needs.

Sorry for the long post but I hope this has been helpful.

@HopefulMother1 I’m not sure my post will reassure you, but I don’t see any reason why your son won’t turn out to be neurotypical, it is difficult to tell at such a young age, but completely understand why you want to know if there is anything you can do to support him now. Equally if your son is neurodiverse it is not the end of the world, he already has the most important thing he needs growing up, and that is a caring and loving mum who is looking out for him and determined to give him whatever support he needs. TheStrenchofTruth has her little computer scientist and I have my gorgeous, funny, smart boy who has the most incredible general knowledge and is so much fun to be around. Our children will do great with our support and love.

Thank you so much @SuperSue77. How incredibly insightful. I have heard of how long-winded it can be to have a child assessed, and how relieving it is just to know what that something different is about the child. I honestly don't know if I'm made of the exceptional stuff mothers like you are to cope with 9 years of back and forth with this. It sounds quite emotionally draining (especially as you probably had to keep the happy appearance up for your son at all times). I can only hope and pray I am - or that my son starts understanding more, exhibiting less concerning behaviour, and puts all my worries to bed!!

I am keen to push ahead with the assessment to ensure an early intervention plan is in place. The behavioural therapist has done a good job of putting me at ease with the process. One step at a time at a pace that works for us and our son she said. She also said that working with parents is most important at this age as we are the ones giving one-on-one lessons. Therefore she is happy to focus on us and our son only, for now, and go from there. In the meantime, I have massively simplified all that I say to my son to make understanding easier, and read to him constantly. So I will say, "Eat", rather than, "Time to eat breakfast." Also, he seems to enjoy me reading to him as he will sit on my lap and look at the pages (not always what I am pointing to, but I try to point where he is looking and label), and it is a great way to point at things. I heard Laura Mize, speech pathologist, say that you must meet them where they are: point to things near (such as a toy they are playing with) rather than far (a car passing by). I'm trying to create as many opportunities to do so to get him pointing. He says "hello" like a Teletubby now, but still no waving. The understanding is the key I believe. I feel like the more he can understand, the more he'll be able to engage in joint activities and do gestures. I've gone off on a tangent now....

I'll update as and when there is progression of any kind.

Hi, I'm also concerned about my child, doesn't sound too dissimilar to your boy (tho mine isn't walking) so am following your story with interest and wish you well

Hi @Losinmymind . I will keep all updated here as to how things progress. Too many threads on Mumsnet of this nature just end abruptly and you can't help but wonder what the outcome was. So far all remains the same. Let's hope this just turns out to be a phase that passes as it has for many.

Thank you, yes let's hope it'll all work out. I went to the Dr today and she seemed to confirm some of my gut feeling whilst simultaneously saying they can't diagnose anything yet. I can't believe we have to just watch and wait, I am losing my mind. Good luck and keep me posted x

It is awful that there seems to be these signs and milestones we are told to watch out for/monitor, yet at the same time told they may not strictly apply. It's like a bad joke! To give you hope @Losinmymind, I spoke with a mother this weekend who was in exactly the same position as us 1.5 years ago. She paid for her daughter to see top doctors and was told, "It looks as though your suspicions may be right." At the time her daughter could not walk, feed herself, follow simple instructions nor was she saying any words. Her daughter is 3 years old now, super articulate and outperforming most in her class. You just never know really. No one truly does I feel.

So my son randomly started pointing at bottles this week. I praised him for doing so, and so he keeps pointing at the same bottles and looking at me for praise. I can't seem to transition him from here however. He also seems to be trying to copy more this week. He has tried to put on his socks, picked up the comb to comb his hair, and put my slippers on to walk around the room. My husband has also taught him how to high five. Although this may all sound promising, he still doesn't understand much more than before, his babbling is repetitive and has not become more conversational as hoped, and he now tiptoe walks from time to time. Next week the behavioural therapist will meet him for the first time. Let's see what she thinks.

@HopefulMother1 , do you mind if I ask what area of the country you are in? I want to stress my earlier point that what is really important is early SALT. So you may wish to obtain a private SALT assessment/report.

@SuperSue77 it is very difficult to find a school with fewer than 30 children in a class that offers a curriculum appropriate for an academically able child. I have looked far and wide - I believe I have left no stone unturned. My Y6 ASD and ADHD son is headed to a local mainstream school (with 30 kids in the class) who have told me they won't be delivering the provision outlined in his EHCP, which I fought very hard for and cost me a fortune. We applied to to a variety of private school, and no one wanted him. If senior school doesn't meet his needs (including his thirst for academic excellence) then we will probably have to home school with the help of Wolsey Hall Oxford.

Hi @TheStenchofTruth . I am not far from Watford. I will look into a private SALT. I admit I did not initially because I read mixed reviews on SALT outcomes, and also have seen much highlighting the importance of behavioural understanding in order to attach words (hence the behavioural therapist coming).

Maybe an initial chat/consultation with someone like this might be helpful?

www.autismdoctor.co.uk/dr-ruth-rogers

Thank you @TheStenchofTruth . I will reach out and see what she says.

I should probably add that the behavioural therapist my son is due to meet is a specialist in autism, and can refer him to a SALT within her practice if deemed necessary.

So the behavioural therapist assessed my son in order to prepare an intervention strategy. She said he has good eye contact (this has massively improved since my first post), responds to his name well (well, he does most of the time now), and plays very normally with his toys. He still isn't pointing or waving mind you, and she did say by now she would expect a good amount of words and particularly in context (he says no words in context). She also said she would expect requests at this stage, for example saying, "nana" in the supermarket when passing the bananas to indicate a desire for a banana. This he certainly doesn't do. He'll just look at what he wants and whinge. So, she is putting together a plan of action, and will work with my husband and I to see what works best for our son. She also said that his blocked ears, as mentioned by the GP recently, need to be sorted out to rule out hearing issues which naturally would impact development. It's been an exhausting week mentally.

I am pleased to read this. It sounds like you got some good advice. And you are doing such a fantastic job because you are starting early. Lots of children don't get the support they needed until after they have left primary school, when much of what they needed is no longer available.

Thank you @TheStenchofTruth. I do hope the intervention strategy is a good one. I have been thinking about your suggestion of a SALT, and think you may have a point. I will speak with the behavioural therapist and see what she thinks. Thank you for your continued support here. It is so appreciated.

So, I received the intervention strategy from the behavioural therapist, and was completely underwhelmed. I found nothing more than observations I had made, and advice I have read online before. Moreover, it came at a cost of £350. Needless to say, I have no intention of paying that sum twice a month for what is pretty much available online.

My son has started to link words with actions/items, i.e. "uh-oh" when he drops something, "nana" when he spots a banana, "accol" when he sees an apple, etc. He has also started putting the right actions and number of claps with nursery rhymes. He follows my point most of the time if pointing to something near, and has very occasionally pointed at something in a book if he can also say the word. My concerns still stand. He isn't pointing consistently, and isn't able to follow many simple commands, i.e. "give me your shoes". He did, surprisingly, give everyone at a party we attended at the weekend a massive wave when we were leaving. That was great. However, I did notice the difference in speech and comprehension between him and those his age (I know you shouldn't compare).

The health visitor will be coming by in August. Let's see where we can get him to by then. Also, if anyone has any recommendations in terms of private SALT just outside of London, please let me know.

I think honestly the spectrum for autism is so wide and there is absolutely no rule book for what they do/don't do. My son is almost 3 on the pathway for potential diagnosis. He is the smiliest little boy, good eye contact, loves being around other kids. Basically loads of things you wouldn't expect. However when he was seen by a SALT they noticed a few things about him which suggest Autism. I first became concerned when my son was 17 months for the same reasons you are, lack of language, understanding and gesture use. Unfortunately it's a very long waiting game. Your son will progress on his own timeframe, take a look at the communication pyramid. That's what the SALT will look at to see where you son is, there is an unbelievable amount of stuff they need to do involving play to develop language.

Thank you @Justbecause19. I will indeed check out the communication pyramid. It is all so confusing tbh. One day he seems really engaged and can label most that I point to when I ask, "what's this?" Other days he just sings nursery rhymes (most of it in baby language) and isn't interested in engaging new skills with me. Maybe this is normal, I don't know. I haven't got a clue what is normal anymore. His comprehension definitely isn't where it should be even if he does eventually point consistently. I just got the referral letter to privately check out his hearing. Let's see what comes of that. I will feel much more at ease once his comprehension improves. When did your son begin understanding more?