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

(19 Posts)
Quercus3 Mon 26-Dec-16 02:06:06

Fabulous update. You sound a lovely family smile

3penguins Tue 20-Dec-16 11:55:17

What a lovely update

FirstTimeMummy82 Tue 20-Dec-16 11:43:51

Hi guys,
So sorry I haven't updated this thread sooner. My son does have Autism. He has been diagnosed with ASD. Other people were constantly reassuring me that everything was fine and boys are just late developers and all that but deep down I knew. He was on a different planet. He didn't play with toys properly, was unresponsive. Children who can't talk still manage to communicate in other ways. He couldn't even gesture. The NHS was taking forever with referrals (I moved his 2 year assessment forward, they referred him to the speech and language department which took months but before we saw the proper speech therapist we had to be assessed by someone else first) this was all before we got referred to a Paediatrician so I wasn't willing to wait any longer and booked him in to see a Private Paediatrician. He confirmed he had ASD. By the time we got referred to our community Paediatrician which was agessss later, I didn't tell him we'd seen a Private one, as I wanted to see what he said. He didn't say at first he thought he had ASD (although I knew he knew) and it was about a year later he got formally diagnosed with it. It's important they get the diagnoses as they won't receive funding and support otherwise.
Regarding the help we got; his nursery were brilliant and brought it to my attention that things weren't quite right. I already knew though and had started the steps with his GP. They applied for funding from our council and he received 1:1 at nursery which was great. When we saw the NHS Speech Therapist she wrote this really damning report about how he was significantly delayed in his social/communication/speech/understanding then said until his understanding improves she won't be able to offer him regular speech therapy sessions. Oh great! What a help! And how exactly do I make his understanding kick in? Anyway I wasn't willing to just sit back and do nothing as I knew how important it was to act fast as the younger they get support the better. Luckily we managed to find this amazing Private Speech Therapist who specialises in children with ASD. She taught him PECS and he developed a lot straight away and was able to communicate non-verbally which relieved a lot of his frustration as he was starting to have melt downs. Six months later when the NHS Speech Therapist visited us again she was shocked at how far along he had come. She knew all about PECS and the techniques that Krystina, our Private one had used, so she could have done the same. One good thing that the NHS offered us was this service called Portage/Portex or I think they call themselves the ASC Team now. They visit you at home and at the setting and offer you 6 sessions. It is for children with social and communication difficulties. They offer you advice and techniques on how to bring them along. I had to fight to get the sessions though as there was a massive waiting list. I'm not saying it's the NHS' fault by the way. They have the expertise, they just don't have the resources. My son went to mainstream Pre-School and continued getting 1:1 for an hour a day (he did half days every day). They were fantastic and included him in everything and he made little mates (although they played with him more than the other way round though!) The girls have always fussed over him as he's a good looking boy lol. When he was in Pre-school we got the ball rolling with his EHCP (the new 'statement') as I wanted it well in place before he started school. Without this he wouldn't be entitled to any extra help/funding. We decided to apply for our local mainstream school, providing he received 1:1, as his cousins went there and it's a lovely little school with small classes. As part of the process we had reports written by his Private Speech Therapist (as she had seen him the most out of all the professionals), an Education Psychologist assessed him (which sounds scary but it wasn't and she was lovely) and I had to submit evidence and fill in various forms. We got it done super fast and it was all in place come September and we got him in the mainstream school we wanted. The EHCP Co-ordinator who was really nice awarded him with the full funding we wanted so he ended up getting full 1:1 support. The school were amazing and did all they could to develop him. We were always going to play it by ear as it may turn out a specialist school would be more suitable in the future. Half way through the year we decided to do a dual placement and he went to a local special needs school twice a week. They have worked with the mainstream school before and it worked out well. At the special needs one they had a swimming pool, softplay, a speech therapist etc so it seemed daft to not take advantage of their expertise. A lot of the kids there have ASD and I wanted him to get an education. This year we decided to do the majority at the special needs school as he still isn't talking properly (although his understanding and communication is MUCH better) and he wouldn't be able to move up to year 1 with his friends in the mainstream school as it is classroom based and a lot more structured, so he is repeating F2 once a day and does the rest of the time at the Special Needs one. We felt it was really important to keep the friendships he'd made with the children at the mainstream school going for as long as possible as he just didn't get the same interaction at the special needs school (as they are all like him lol.) Even though his mates had moved up a class the teachers made sure he spent time with them still. The girls at the mainstream one really brought him out of himself and loved him to bits. He loved being around them, and the boys were good with him too. So that's where we are at the moment. 4 days a week at the special needs one and 1 day at the mainstream one. He still sees Krystina, his private speech therapist, and he now talks in basic sentences such as 'I want juice'. We have had to teach him this in stages and it was a breakthrough when he said the full sentence the other day. PECS is a real must. It worked well with us and teaching them the art of exchange led to verbalisation, which is the point of it. He is 5 now. He has just started to have a breakthrough with the toilet training and has started doing wees in the toilet. This is massive. In January the school have said to take him in in his undies which is great. I think the magic age with ASD boys is 5. And things change with them all the time. George has sensory issues and still does mad things but it is completely different to what he did last year. He is such a happy, lovable, sociable little boy. He goes to trampoline club every Saturday which he loves as his favourite thing is still bouncing. We go out for meals all the time, weekends away, we go abroad - he is fine on a plane. He does have melt downs occasionally which usually comes down to slow wifi or the iPad not working(!) but we've learned how to manage them. When I go out I just make sure I have his survival kit which consists of things that calm him down like chocolate buttons, crisps, milk. Basically damage limitation! If we see he's on the turn we give him this and it calms him down. He can't queue but there are lots of places that give you fast track if your child has ASD. We go to autistic showings at the cinema, we went to an ASD friendly Santa's grotto (he loved it and said 'Father Christmas'). His vocab is massive and knows most words. He can label everything. He knows his alphabet, numbers, colours, animals. He used to HATE getting his hair cut and would freak out and now he's absolutely fine with it. Although he used to be fine brushing his teeth and now that's a struggle! I have had another child since, a girl who is 2 and a half. She loves him and won't leave him alone ha. They hold hands and cuddle which is nice although she does annoy him a lot. I know he is going to be fine and he is developing every day. There are loads of good apps on the iPad for ASD too and there's lots of support out there. We only realised not so long ago we are entitled to DLA and we now receive a payment once a month which helps with the private sessions etc.
Sorry for the length of this post! Obviously it had been some time. But the best advice I can give is if you feel there is something wrong, get checked out. As a parent you just know. My husband was in denial for a long time so I went through it alone but I knew it was imperative to be proactive and not bury my head in the sand if I wanted him to have the best chance in life. The sooner you act, the better the outcome. Also if there isn't anything wrong - bonus!
It took me about a year to come to terms with it. Crying alone most nights. But I got over it and I now know it's not the end of the world and this is more common than you know! He's a super little man, one of a kind and has opened my eyes to a whole new world. The future is looking very positive indeed.
x

Chhalma Tue 13-Dec-16 09:21:47

I have got 22 month old boy and my scituition is same as yours . Could u plz updated me what was ur child's outcome after seeing ped. I am worried if it is any autism . What is his condition now. Waiting for any update .

Dad1234poppy Sun 11-Dec-16 17:03:01

FirstTimeMummy82 could you please update as what happened with your son as it sounds identical to my 16 month old boy. I know it was 3 years ago so be interested in outcome because I'm worried sick that my little boy has autism.

He smiles at us when we smile at him, he gives good eye contact. He has started copying things we do like putting his both arms up when we say yay. He has lots of cuddles. He puts his arms up to be picked up and is babbling But doesn't say any words or point, doesn't wave, doesn't respond to his name. Doesn't bring us things to share interest.

dykhadgi Wed 03-Dec-14 09:15:05

FirstTimeMummy82: can you update progress of your child, My son also have same problem.
Email: dykhadgi@gmail.com.

kkan Tue 20-May-14 15:49:20

FirstTimeMummy82 -- your son sounds exactly like my 22 month old (I mean almost identical symptoms) and I also have the same concerns as you. It has been more than a year since your last post. Would you be able to provide me with an update on your child's progress? Thanks in advance.

The one key feature of autism is difficulty in communication and abnormal social interaction. My son is able to somehow tell us (mostly via gestures, grunts, crying, body language, or bringing me the remote if he wants to watch TV) what he wants or if he is happy or sad and thereby still able to communicate with us. He loves playing with me (Dad) and is crazy about his mommy. He very clearly understands who his parents are -- and in many cases of autism this is not the case.

He is very good in learning new games such as throwing and kicking the ball, playing with toy cars the right way (which I am told autistic children will not do), stack blocks, good receptive language (i.e. understanding a few commands), etc.).

I would appreciate an update be it positive or negative. I have already qualified for early intervention and a SLP is suppose to come to our house for the first time on June 2nd -- I am told that makes a lot of difference -- I certainly hope so.

Although I know Autism is a spectrum disorder and my son being on the mild side of things will not impact his life very much, and with therapy he could lead a normal life, my personality refuses to understand that and continues to make a mountain of what could very well be a mole hill. Many sleepless nights and tears when alone. My wife is quite confident in his abilities and I don't want to share my concerns with her -- her confidence will be weakened as a result.

I love my son.

FirstTimeMummy82 Thu 03-Jan-13 17:29:37

Oh and I was worried because he didn't make much eye contact with people but in the last few weeks he has suddenly started making eye contact with everyone. He used to ignore my dad completely(!) Like he would deliberately turn his head away if my dad came up close to him looking at him, and he'd just blank him all the time, but suddenly he's started acknowledging my dad and looking at him in the eye and responding to him and he's even being affectionate to him too. It's so weird the way he used to just completely ignore him and not even look at him??

FirstTimeMummy82 Thu 03-Jan-13 17:19:03

Hi guys,

Thank you for all your comments, much appreciated. I haven't managed to get on here as soon as I'd have liked due to Christmas etc.

I bought the book "It takes two to talk" as a lot of people on here have recommended it and even though I haven't had time to read much, it does have a lot of useful techniques in it and explains a lot. I think he has been communicating more than I was giving him credit for. The day I wrote my initial post my mum (who had had him that day) said he communicated to her that he had done a poo but banging his nappy then taking her hand and banging his nappy with her hand. He's actually done that to me before but I didn't put two and two together and just thought he was being a little weirdo.

He still isn't talking properly but he is babbling a lot more and chats away in his own little language. He sings all the time too. He always says "Ah da ah da ah da ah da ah daaaaaaaaa"(!) and I know it means something to him but I don't know what. He also says Ba ba a lot and other sounds. He is a happy little child and always giggling but I've noticed he is starting to get frustrated more and more and I think this might be down to not being able to talk

He still doesn't point at things and doesn't bring things over to show me and if I ask him to do stuff eg. bring your teddy to mummy, he won't. The fact he isn't pointing to stuff is worrying me. If I point or look at something he will follow my direction though. I know he understands most things I say like come here etc. In this book I bought it says to listen and let them lead so I think I haven't been cottoning on to certain things he's been doing. He is 2 at the end of Jan and I'm hoping he starts talking by then but I bet he doesn't.

I went to the doctors the day after I wrote my intial post and the doctor just said he wasn't overly concerned and it's early days for a speech therapist but he'll notify my Health Care Visitor of my concerns so they'll contact me re - the 2 year evaluation. I've also contacted a speech therapist myself with a view of getting a consultation as I am impatient(!)

I've tried only giving him a bit of milk to encourage him to ask for more but he just kicks off big time! I've started being even more animated in my voice and applauding him when he does things and his face lights up when I do this so hopefully that will help. I'm playing with him a lot more now too. He's such a good boy he'd just play on his own quietly while I'd do the house work but now I'm thinking this is probably why he hasn't developed properly, because I didn't play with him enough as this book says they learn the most through active play. Hmmm I wish I'd have read this book BEFORE I had a baby lol! Everything is so blink'n complicated. Trying to juggle work, running a household, being a good mum and wife AND have a life is nearly impossible!

Any hoo super long post yet again! Soz! x

blondemumma Thu 20-Dec-12 16:43:38

Hiya

Don't know much about autism, but I can say I have a 27 month old DS who hasn't said a word yet. He can say mama and dada but doesn't really do it in context. He can do noises like ah ah for monkey and ra ra for dinosaur and ba ba. He just doesn't want to, and shakes his head if I ask him to say something. He does point and take my hand to show me what he wants and is quite vocal in noises.

I went to a children's speech therapist a couple of months ago - they sent us for a hearing check and his hearing is perfect, as I thought (he understands everything and responds to requests etc). Definitely worth starting this process I thought, as I don't know how long it will take him to catch up even if he starts chatting away soon.

I met another mum whose 2.5 yr old was just the same and only started saying words at about 27/28 months, so hoping for a word before Christmas! Don't worry too much and be patient (it is so hard, I know!) He sounds happy, and like my LO, affectionate. My LO also loves the telly too much at the moment!!

firawla Thu 20-Dec-12 13:34:15

Op, if you are worried I would say speak to a professional atleast just to put your mind at rest. As speech is the main thing then possibly an slt would be a good one to start. Have a look if you have a speech n lang drop in at local children's centre, or if there are any dates where slts come to stay and plays, then you can speak to them in an informal setting and they get a look at your ds while he is playing and see how he interacts with them. If they have concerns they can then refer him on just from that initial meeting, or they may be able to reassure you.

I would also say pop over to the sn section here if you think it would help, even though your ds may not have autism or any sn but it is something on your mind and there are loads of very knowledgeable and helpful people over there - getting more info can not do any harm, so worth bearing in mind.

Also do get the hearing checked even if you are sure that he doesn't have hearing problems, some dc are so good at coping with the hearing loss that you will not know they have it!! Hearing loss does not mean they are completely deaf, it can be to different levels so sometimes they can hear but not clearly. Think of when you put head under water, you can hear but very muffled, so would still be able to respond sometimes and follow instructions but it would make everything more difficult, especially if you are trying to learn to talk and still building up the vocabularly. so it is a definite one to check and that's the first thing to do normally.

My ds2 does have autism (he had/slightly still has some hearing loss too, so its not necessarily just one or the other) I first wondered about this from him being about 18 months, he was diagnosed a couple of months back, at about 2.10
My ds is also very affectionate, sociable and all of that. He is actually more sociable than my other 2 dc and people always love him the most cos he will go to anyone. In his case it is actually part of his autism, he doesnt quite have the normal social boundaries, he doesnt have the normal wariness of strangers that other dc may have. He also has a very good memory, so if theres anyone he's met previously even once or twice and they were nice to him he will remember them and run straight to them and hug them, he is very loyal like that! However cos of his personality, at first when I started to wonder about autism, friends and family would all be like nooo, of course not he can't be autistic he is so affectionate! It is a myth though that children with asd can not be affectionate.

With your ds, because I am quite a believer in mums instinct, i would get him seen, and keep records of what he can, can't do and anything you think may be relevant, just in case you do end up needing it. If these concerns are what you genuinely feel then don't have to listen to your mum or others, she may be a teacher but doesn't mean she is automatically right.

In my case, my ds has an uncle who is actually a paediatrician! (not developmental though i think he does other stuff) and a good friend who works in children's centre so she is qualified in early years stuff and used to see my son every day - they both at the start were among the ones telling me no, he cant be autistic, dont be silly etc etc. Because people care about your child (like your mum) they may well be more reluctant to consider that there could be a problem. because they dont want there to be. if that makes any sense??

Early intervention is important and the longer you wait before getting him seen initially, the longer before he would get an assessment - and the waiting times can be very very long, so the fact you've noticed some concerns now is a good thing IF (and he still might not!) he has asd, then the sooner you could get him some help. Sounds like you are doing a lot to encourage him anyway, playing and talking is the main thing whatever the situation. Whether he does or doesnt have asd just keep doing that as much as possible. Do you know all the usual slt techniques of using shorter simple sentences, speak slowly, comment on what they are doing rather than asking too many questions - etc etc, as all this will help either way.

Good luck and I am sorry for the massive post!!

mycatlikestwiglets Thu 20-Dec-12 13:30:11

Imo you're panicking too early OP - he's only 22mo, a lot of babies (and he still is a baby really) aren't talking much by then. Does he make animal noises? Remember those are classed as words too. Have you sat down and made a full list of his "words" (and include in those anything he says which you know means something specific, even if it isn't the right word)? It may be longer than you think. Does he communicate in other ways (e.g. pointing, as mentioned by another poster above)? Fwiw, my DS is about to turn 2 and isn't talking fluently yet either, but in the last few weeks his vocabulary has increased enormously compared to 22mo. I have no concerns at all because he clearly communicates to me, just not always (atm) in a language which everyone else can understand.

It's absolutely worth raising your concerns with your hv as you can get reassurance or a referral if necessary. Also speak to the nursery - they'll have seen children with a wide range of abilities at 22mo and can let you know if they consider your DS to be out of the "ordinary". I wouldn't be overly concerned based on the list you have given though.

Fazerina Thu 20-Dec-12 13:29:23

Sorry about the typos, I'm on my phone hmm..

chocjunkie Thu 20-Dec-12 13:28:02

BETTER LINK FOR M-CHAT

Fazerina Thu 20-Dec-12 13:27:42

He sounds a lot like my 19-month-old DS. I thought only my DS was doing the 'pretend to be blind'-game, I think it's hilarious grin!

I also posted on here yesterday, ad my DS shakes his head from side to side when falling asleep and I had read somewhere it could be a sign of autism, but people told me that many still do that or other quirky things as adukts..

It's so easy to worry and make mountains out of molehills when it's your first isn't it?! But your DS sounds like a lovely and cheeky little boy to me.

chocjunkie Thu 20-Dec-12 13:24:45

First, I would have a chat with HV or GP to get a referral for a hearing test just to make sure there is no underlying hearing issue (such as glue ear); probably also worth mentioning your other concerns (but be prepared to get the old wait-and-see response.

how does he communicate with you? how does he tell you that he wants a drink or a certain toy?

Do you think he does understand you? Can he follow simple instructions such as "go, get your teddy" or "go get your shoes"?

does he come to you to show you things?

at 22 months, it is also a good age to do the M CHAT

BBQshapes Thu 20-Dec-12 13:09:02

Hi FirstTime. You sound really worried, and understandably so. I think the first thing you need to do is get a referral to see a Speech and Language Therapist and also a Paediatrician (if the area you are in let's you get direct referrals to Paeds). At least then you will know either way, otherwise you'll be Googling (like I would be!) and driving yourself crazy.

It's not just about the things a child is not doing, it's also what they are doing. The professionals will look at both areas.

Does he point at all? Does he link this pointing or pulling on your hand with eye contact with you (it's called joint referencing - looking at the object they want but also looking back to your eyes)? How does he communicate what he wants and needs (i.e. how does he send you direct messages)?

Children use lots of environmental cues to help them understand what is being said (e.g. where you are looking, the object you are showing them, the daily routine, what others are doing etc etc). This is a really good skills but it often means adults can over-estimate the language that a child is actually understanding or not. It's good to try and see if your child can follow simple instructions that are out of context without giving any visual clues (e.g. can they go and get something random from another room - not just something like 'put you nappy in the bin' which is something that happens anyway as part of routine). Does that make sense?

I really feel for you. Good luck getting some answers.

Wheresmycaffeinedrip Thu 20-Dec-12 12:56:54

Sounds like my 2yr old dd. she can say some words but chooses not to but does interact alot with the family. She's happy and I haven't noticed any problems with eye contact and she doesn't always respond to being called but then neither does my 6yr old. Sounds normal and he looks like he does alot, guess some kids just take longer. He clearly understands though of he follows an instructionsmile

FirstTimeMummy82 Thu 20-Dec-12 12:48:20

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

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