22 month old son not talking and doesn't always respond to name

[FirstTimeMummy82]

Hi everyone,
This is the first time I have posted something on here. I usually just read everyone elses posts and I don't come on that often.
I am really worried about my son's development. He is 22 months old, he is my first baby, but he isn't talking. He says the odd word like mama, step, train, up. He doesn?t say the same words over and over again though and he doesn?t respond to everyone when they say his name. I think he is choosing not to respond as he does respond to me and my mum (sometimes!) He definitely isn?t deaf as he turns around when the tv or other noises happen. I?m panicking he has autism. My husband and mum both think he definitely doesn?t have it as he is really happy little boy. He?s very affectionate and loves cuddles and sitting on your knee. He plays with his cousins and he loves to be tickled and when you stop he actually takes your hand and puts it back on his tummy so you do it again. My mum who looks after him quite a lot as I go to work (she used to be a primary school teacher) says she doesn?t think he has autism because he?s so sociable and affectionate and he understands what she says. If he goes to do something he shouldn?t and you say ah ah no, then he stops. We?ve taught him to do high fives and he loves playing peek a boo. If you don?t know he is in the house and you call him, he?ll come out to show you where he is. He?s also has really good concentration levels, for instance, he will sit for ages reading books. Ha obviously he?s not actually reading them(!) but he looks at all the pictures and that and carefully turns the pages. My friend?s children who are around the same age just destroy them and get bored after a few minutes. But it?s embarrassing when my friends try and talk to him and say his name ?cause he just ignores them! He started nursery about 2 months ago, he only goes for half a day a week (there's no more availabilty at the mo) and he also goes to a playgroup once a week and since that he?s been babbling loads. The thing is, when I Googled it (which I know you shouldn?t do!) he should have 50 words in his vocabulary by now, he should be pointing at things, he should be bringing objects like toys over to me and he should definitely respond to his name. He has his 2 year evaluation coming up so I was just going to wait for that but now I?m thinking of taking him to our GP as I?m so worried he?s got autism. I know they?ll say he?s definitely displaying signs of autism though and I read it?s not so much the odd things they do (he loves wheels, he bounces loads, looks out of the sides of his eyes) as all kids do weird things, it?s more the things they AREN?T doing. He?s such a happy, affectionate, content child, could it really be autism? I play with him all the time and encourage him talk but I?m going to start doing this even more. I always know what he wants so I just give him things like milk when I know he wants it so I need to start making him ask for it (but he just kicks off!). And I sing to him a lot. He knows the actions to ?if you?re happy and you know it? and claps his hands and stamps his feet. Also he loves Baby TV but I?ve stopped putting the telly on because he LOVES it (too much) and doesn?t pay any attention to you when it?s on. The thing is he knows how to work it now and I?ll hear the telly go on and he?s put it on himself lol. I?ve done a list of the things he does and doesn?t do below which I?ll take to the doctors.

Things he does:

Peek a boo
High five
Jumps a lot
Walks on his toes
Pretends to be blind (screws up his eyes and walks around with his arms out)
Laughs a lot
Puts his arms out to be picked up
Says the odd words
Affectionate
Likes to be cuddled and likes to sit on your knee
Plays with his cousins and likes being around other kids
Claps
Sings
Babbles
LOVES the telly (too much)
Has a temper sometimes where he clenches his fists and shakes
Looks at the corner of his eyes
Gives you his hand when you ask for it
Loves being tickled

Things he doesn?t do:

He doesn?t talk
He doesn?t respond to his name to most people
He doesn?t look at everyone

I was wondering if anyone else is going through the same thing with their child?

A very worried mummy xx

@reliablendn Thank you so much for your lovely comment x

"Hand leading is using the parents hand as a tool without acknowledging the parent as a person, a 22M old speech delayed but typically developing child would use eye contact and gestures to ask a parent to carry on playing/tickling them and not hand lead. Lack of gestures was probably the most concerning deficit - large studies have shown that an infant not pointing to request AND to share things of interest (like a plane in the sky) by 20 months is nearly always indicative of autism."

But not always indicative of autism, my child didn't point to show interest until 28/29 months and even later for pointing to request and no words until 3 - he doesn't have autism but a speech and language delay, I think that speech and language delay can be caused by autism/mod learning difficulties and just be an isolated delay - although there could be other things???? I think its important for a child to be assessed by a SALT who specialises in young children. Autism or not I remember how terrified I was when i was facing the possibility that my two year old with no understanding might remain non verbal.

And if anyone reading this is concerned about speech development this podcast might be of interest Teach Me to Talk

Hi guys,
Sorry for not updating sooner, I haven't been getting alerted when comments were added to this thread. Mega long post coming your way!
Thank you all so much for your lovely comments, I'm glad I bring hope to other people with concerns.
My son is now 8 years old. He is doing really well. He is such a funny little man. He will do mad things deliberately to make us laugh, then he will laugh. You don't think of people with ASD of having a sense of humour but he definitely does. Development-wise he has come on leaps and bounds. You can tell when meeting him he is autistic. I'm not going to lie. He does crazy facial expressions, makes mad noises and still loves a good bounce(!) He is obsessed with my hair. He loves it in his face and has to touch it all the time. He does little crazy rituals before he can get in the shower and before he can leave the house. He is also obsessed with showers. Every time he enters our house, he has to have a shower. He had 3 showers in the space of 2.5 hours the other day because we kept having to go out for various things. He is now at his special needs school full time. It just made sense to move him across fully. He still has his private speech therapy too once a fortnight. It's a lovely school and even though the teachers are really good I'm not convinced a special need's school which has a class full of other autistic children is going to be the best way to educate him. They are small classes but every Autistic child is different and the classroom can be quite chaotic. Some of them can talk, some can't. Some are more severe than others and they all have their own unique minds that have to be taught in different ways. Because of this I researched ABA Therapy (Applied Behavioural Analysis). It has a lot of bad press for some reason, possibly because the Local Authorities don't want to have to pay for it. People say it's 'intense' and all this other stuff but providing the child is receptive to it, it can massively accelerate their development. There is nothing bad about it and I wouldn't do it if he was uncomfortable. You basically have a friendly tutor who works on certain targets for however long you want and can afford. George has massively improved since having it and he loves his tutors. It took me about a year to source an ABA Case Manager and then a Tutor. They are both separate, usually self-employed so I have to organise them and the school and arrange meetings with everyone. They are very hard to come by where I live. I'm lucky because his special needs school was open to having the ABA Tutors go in and work alongside their teachers. This is pretty unheard of and most parent's have to do the ABA at home. But it's more effective if you can roll it out at school. ABA in a nutshell is a personalised plan and actually every child would benefit from it. The ABA Case Manager assesses the child then devises a plan and the ABA Tutor delivers the plan. We have two part-time tutors. They work on specific areas the child struggles in and constantly check and reassess the strategies till that stage is complete then they move on to the next thing. It's actually quite similar to what his speech therapist does and they all work together on the same targets. Everything is data driven and results are all recorded, unlike the style of teaching they use in Special Needs Schools as there is no real evidence to support how they teach is actually effective. A revolutionary ABA School is opening not far from us so I desperately want him to go. ABA Therapy is expensive but I'll do whatever it takes for my son. ABA is massive in America and it's the preferred method of teaching Autistic kids in 48 states. Sadly the UK is around 30 years behind America when it comes to Autism.
Anyway he is absolutely fine. This year we drove to France (he loves the ferry), went to Portugal and he was fine in the airport and on the plane (they give you a lanyard in Manchester Airport so all the staff recognise it and they are all so helpful). We just got fast tracked through everything. It was great! He loves his holidays. We're off to Wales this weekend and we stayed in Hampshire in this luxury treehouse in the summer holidays and went to Peppa Pig world which him and his sister loved. He got a wrist band for being in the A-Team so we all got to go on the rides first and didn't have to queue. He is toilet trained for number 1's but he's still a bit funny with his number 2's. Sorry for going in to detail lol. It's not really an issue for us though. The biggest thing that has improved is his understanding. Years ago if I was to say 'Bring me your shoes' he wouldn't. Now he will literally do anything I ask. He can say 'Mummy I want . . .' 'Hello' 'By Bye' 'Thank you' 'Stop' He can dress and undress himself (sometimes he does need a bit of help) and he's so funny because he learns phrases from his games on the iPad. The other night my husband said 'Come on, time for bed' and he said 'Pick again!' - ha ha it was so funny. He's still very affectionate and cuddly. He loves being around other kids, even though he still doesn't play with them properly. If he's on a bouncy castle for example, if other children get on his face lights up. He still has the girls after him. I think because he's so 'aloof' that makes them want him more lol. My daughter is brilliant with him. She is 5 now. Having a brother with autism has made her such a lovely, kind caring little thing. He will go up to her and yank the iPad off her and she'll be upset for a few minutes, then say it's okay because she knows he doesn't understand. She really looks after him and has even taken it upon herself to be a mini speech therapist as she copies with his speech therapist is working on. I've never known a child with so much empathy. My son's friend at school, Taylor, who also has ASD could never bear being around other children but him and George have always had this special bond. Now they automatically hold hands when they are walking together and the school has kept them in the same class all the way through school. My daughter adores Taylor and has gradually made him not hate little girls (he couldn't be around them till he met my daughter) and now they hug and kiss and his mum said he's fine around his cousins now which he never was before. All because of my daughter. We take them all out together all the time. My son loves eating out, bowling, weekends away, he goes to trampoline club. As long as I take the survival kit (Kinder Eggs are now a key element of the kit) if we see a meltdown is brewing we can stop it in its tracks. A lot of time he's easier than my daughter(!)
So in summary his language has really improved and is getting better every day, is understanding has MASSIVELY improved and he can now follow instructions. His eye contact is perfect, he giggles all the time. He actually makes up songs too. He used to sing this song which sounded like made up words and one day my daughter deciphered what it was and it was a Mr Tumble song. So for years he'd been singing this song and it wasn't made up. She's so clever for getting it. He was made up when we sang it back to him.
So if anyone on here is worried or going through a diagnosis, then please please don't worry. It really isn't the end of the world. You will still go through the motions of grief and despair but you will come out the other end. We still do everything we want to and if anything life is a lot more interesting now! If we were to have two norms, it would be too easy. Times can be stressful but whose life doesn't have a bit of stress in it? And our son has made me see things differently. He is a special wonder of the world and has taught me and my family so much. And I'm a stronger person for having him in my life. He's a completely bonkers funny little dude but I couldn't imagine him any other way.

That's a lovely update and I really hope your son ends up at the new ABA school.

Thank you x

Hey @FirstTimeMummy82 this is such a lovely post. Thank you for taking time to write in so much detail. My DS is 4 diagnosed with autism. I am looking into ABA. Couldnt afford it in the long term. He has a EHCP and will start reception next academic year. Is this something the LAcould pay for? I have researched ABA and wanted to try it but no idea where to start looking for a manager and tutors? Any suggestions please? Thank you in advance.

Another worried mummy x

@AladdinMum in your experience, if a child is not pointing by 20M is it always autism or can it be another reason? When a child follows a point (80% of the time) do they then start to point themselves? Thanks!

Not pointing after 18M does not automatically mean autism, nothing with autism is that certain, but it increases the probability with every month that passes after 18M. Following a point is certainly a good sign! Did he show you/give you interesting things when he was younger? around 14M? not to ask for help but just to show you? toddlers with autism tend to struggle with this too.

@AladdinMum yes he did, he would bring me toys that he wanted me to look at and also ones he wanted us both to play with him! The pointing is my only worry, if I ask him “where’s the ball?” Or get me the ball” he will bring it to me but he won’t point to it.

@Newmom12

Hey *@FirstTimeMummy82* this is such a lovely post. Thank you for taking time to write in so much detail. My DS is 4 diagnosed with autism. I am looking into ABA. Couldnt afford it in the long term. He has a EHCP and will start reception next academic year. Is this something the LAcould pay for? I have researched ABA and wanted to try it but no idea where to start looking for a manager and tutors? Any suggestions please? Thank you in advance.

Another worried mummy x

Hi @Newmom12 The ABA was a bit of a minefield at first. Luckily I found a group that was set up by mums who had discovered ABA and it's benefits, to help and support other families who were after ABA. It's called Focus and they are based in Liverpool. They know ABA Case Managers and help you recruit tutors. They also offer a Saturday school, this is their Facebook Page www.facebook.com/focusliverpoolpage/ but as I said they are based in Liverpool so probably not much use unless you live there. I would just Google ABA services in your area. In answer to your question yes you can apply for your Local Authority to pay for it. If you can get it included in the EHCP they have to provide it for your child. All Local Authorities are different, it is easier to get it with some than others. I didn't bother trying because usually the bureaucracy involved in dealing with the council is a joke and I'm impatient and didn't want any hold ups so we have just funded it ourselves. But if you're not in a position to, I would definitely apply through your Local Authority. There are some companies set up where they offer you the full thing ie the case manager and tutors are all from the same organisation but the company I contacted were only interested in working from our home and I wanted it carrying out in school. The best thing to do is just research the internet, I'm sure you'll come across services in your area :-) Thanks x

@FirstTimeMummy82
Thankyou so much for the very informative post, you are a great motivation. Right now I have a 15m dd, I know still very young but she’s delayed in most areas and I’m also worried she may have autism! But just reading your a post gives me courage. Thankyou

[quote Sabu1234]@FirstTimeMummy82
Thankyou so much for the very informative post, you are a great motivation. Right now I have a 15m dd, I know still very young but she’s delayed in most areas and I’m also worried she may have autism! But just reading your a post gives me courage. Thankyou[/quote]
Hi @Sabu1234
I'm glad you found my post useful. It's all so scary at first especially if you feel something is wrong but people around you are saying it'll be fine. Best thing to do is get your child checked out. I wish I had listened to my gut sooner.
Good luck with your daughter :-)

Hi everyone,

I thought I would provide another update as I never envisaged this thread would become so handy for people. It does make me really happy to hear my information and experiences have helped, even if it's just reassurance that everything will be okay. Obviously autism is a spectrum disorder so all children are different, but I've seen all the other members of the A Team at my son's school and they are all unique and special in their own way. I'd say my son is probably one of the most severe out of them all (so that hopefully offers some reassurance as we're doing absolutely great.)

My son is 10 years old next month. My daughter is 6 and she's still brilliant with him. During lockdown they bonded even more so. We bought a double swing for the garden and they would stay outside for hours on the swings together. My daughter also encouraged him to watch films with her and do role play with tea sets. Just having so much family time together did us the world of good. I thought he may go stir crazy and have meltdowns but it was actually the opposite. We loved going on our daily walks and we'd do 'movie nights' and things like that. Both my husband and I work full time so it was so nice to have quality family time together and for me not to be in a permanent chaotic rush.

I can't stress how my son having ASD hasn't hindered our lives. It has taught our daughter (and us!) about a different type of human that ordinarily we wouldn't know that much about. The teaching skills I have picked up for my son I can also apply to my daughter and we haven't experienced anyone being mean to him. Children have actually surprised me, even older boys. They can see straight away my son is different and are kind which is so lovely. Lots of our friend's kids have taken the time to sit with him and interact and look after him.

Last year we flew to Toulouse in France, hired a 6 berth Motorhome and travelled around France, Italy and Switzerland in it. It was so much fun and both kids loved it. This year when the UK was in lockdown but Europe wasn't, we drove all the way down to Saint Tropez in our VW Campervan, staying in Air B&Bs along the way. We were away for a month in total and ended up staying in Belgium and Holland on the way back. The kids were off school, I could work from anywhere and my husband was furloughed, so off we went. We had the best time ever, probably our favourite holiday. Just before the second national lockdown we travelled round the West Country; Bath, Cornwall then the Cotswolds on the way back. We did all the touristy things and my son was fine. He is a lot better with queuing now whereas a few years ago he simply couldn't queue. I'm finding we're having to request for fastrack services a lot less the older he gets.

I definitely put his comprehension down to ABA.
His speech hasn't drastically improved, he still speaks in basic sentences, he will spontaneously label things and comment on things he sees which is good, but his communication and understanding on the whole has radically improved. He still gets upset if the iPad doesn't do what he wants it to do or if you interfere with one of his rituals but it's nothing we can't handle.

One of his ABA tutors left to pursue another career and we haven't been able to replace her so he only has one part time tutor working with him at the moment. Our data shows that when he had access to the most amount of ABA hours, his number of mastered skills hugely increased. So ABA definitely does work for us.

We also applied for him to go to the new revolutionary ABA school I spoke about that recently opened. It's just over 20 miles away from where we live and the council rejected our request as they claim his needs are being met in his current school but we feel they're not. But it boils down to money. The new school is an independent one and more expensive. With special needs school it's the council that funds it not the parents, even independent ones. So it's a lot cheaper to keep him in the state special school where he currently is, even though it's proven it's not the best educational setting for him. It's not even an option for the parent's to pay which I find the most difficult to deal with as we have always paid for everything ourselves and now we've found the perfect school for him, it comes down to public money.

This new school means he'll be there till he's 19 (they are actually in the process of opening a college that will be attached meaning they can stay on till they're 25), they have a residential part where they teach independent living skills, they have in-house SLTs, OTs and unlimited access to 1:1. But the main thing is it's ABA not TEACCH which is the method they use in most Special Needs Schools for autistic children in this country. He actually already knows some of the staff there as they have worked with us previously with ABA :-)

So we've appealed the council's decision and now have a legal battle to change his EHCP so that he can attend this magnificent school. He had a look around the other day, and the teachers got him to engage for over 30 minutes and taught him a new skill. His current school report he can only engage for 15 mins max and I don't know of any skills they have taught him. Everything he does has come from the team we have implemented.

We have hired a solicitor (who is absolutely amazing, this is all he does) and 'experts' and we are going to tribunal. The hearing is in January. I was hoping the council would have conceded by now but they are taking it all the way. I know we will win though, you can't argue with our evidence and the judge will see that. It's ridiculously expensive but it's worth it as I know this opportunity will give my son the best possible outcome in life and means he will require less support from the system in his adult life.

Anyway it's all fun and games. So that's the latest. Never a dull moment and we're very much looking forward to the cruise we have booked next year that sails around the med. Our son really liked the last cruise he went on as he loves boats.

Hi - just wondering all these years later - what happened with your little one? My current little one is really similar. Thanks.

Hello @Motherofdragons2012 if you read the whole thread @FirstTimeMummy82 has given detailed update on her son.

Hi @Motherofdragons2012
Yes as @Sabu1234 said, I have updated this thread over the years on so if you scroll through, you'll be able to be updated on our 'journey'.
Hope that helps. I've written quite a lot of info (sorry if you fall asleep ha).
Jo

[quote AladdinMum]@reliablendn - what are your concerns? this thread is a few years old and I am not sure if the OP is still around.

This is a good thread as it dispels the stereotypical myth that autistic children are not loving or empathetic while in the majority of cases the opposite is true and hence why this behaviour never forms part of any screening schedule. The original description is very interesting as while a lack of acquiring new words can be concerning it is the least of all concerns as simple speech delays are very common in infants this age. Name response can be difficult to measure as if a child is over tested they will start ignoring you (as you are calling them for no reason). The biggest concerns in the original description were when the child put their mums hand in his tummy to tell her to carry on tickling him (referred to as hand leading), looking out corners of their eyes (visual stimming), and lack of gestures such as pointing or showing/giving objects of interest (also confirmed by the OP on her update). Hand leading is using the parents hand as a tool without acknowledging the parent as a person, a 22M old speech delayed but typically developing child would use eye contact and gestures to ask a parent to carry on playing/tickling them and not hand lead. Lack of gestures was probably the most concerning deficit - large studies have shown that an infant not pointing to request AND to share things of interest (like a plane in the sky) by 20 months is nearly always indicative of autism.

However, what an amazing mum FirstTimeMummy82 is! and what a beautiful update! :) she has advocated and fought to get him all the support and services he needs and what progress he has made! From the original description he did have great positives, including mimicking which forms the basis of all learning at that age. With such a great mum behind him he will have a very bright future ahead of him :)[/quote]
@AladdinMum thank you so much for your lovely comment. Such a nice thing for you to say :-)
(Bit of a delayed response here! I thanked the wrong person originally - doh)
xx

My 23 old boy is doing almost the same thing what’s mentioned here. I would like to know how the lil one of firsttime doing. Not sure what I need to do further.

"Lack of gestures was probably the most concerning deficit - large studies have shown that an infant not pointing to request AND to share things of interest (like a plane in the sky) by 20 months is nearly always indicative of autism."

My son didn't point/gesture until 2.5 - he hand lead from two - he had his first unclear words at 3 and spoke clearly at 4.5 (after a lot of speech therapy) he doesn't have autism - but he did have speech & language delay, children will communicate their needs in the easiest way they can, I'm just posting this because nearly always autism does not always mean autism there are many types of speech disorders.

Thank you Esse32! When I ask where is moon, he sees the sky but then when we all point something else at home he hardly even turns or responds. I m not sure if he really understands and what I have to do further. To put him in daycare to be other kids or to take him to peadiatric or to speech therapist.

@Mommy87 A speech therapist who specialises in pre-schoolers, ask for recommendations - from local daycare nurseries, paediatrician's office etc - the website teachmetotalk.com is a really useful resource for parents as well.

@Esse321 thank you so much. Let me try to figure out speech therapist.

@Mommy87

My 23 old boy is doing almost the same thing what’s mentioned here. I would like to know how the lil one of firsttime doing. Not sure what I need to do further.

Hi @Mommy87 sorry for the delay in replying. I've actually given detailed updates on this thread over the years (probably a bit too detailed lol). My son is now 10 years old. He was formally diagnosed with ASD when he was four however I took him to see a private Paediatrician when he was two who confirmed he had ASD, so I knew well before his official diagnoses. We have done lots for him over the years in terms of finding and sourcing private support which has had a big impact on his development. If you want to read back on this thread you'll find all my updates. If you have any questions, just let me know. x

Thank you for your thread! My eldest has just turned 4 and we're still waiting for an autism assessment but it's pretty much acknowledged by us and by his nursery he has ASD. I'm also now worrying about my almost 18 month old as his eye contact has reduced massively over last couple of months. And although he points, he doesn't point consistently and his words also seem to have dropped so I think I'll be trying to go through the appropriate people sooner with him.
But your post is so reassuring at how well he's doing, it gives me hope that these 2 will be ok in the long term

I really hope that you'll see this message and reply... What happened with your son? We're almost at the same situation atm.