Very delayed speech

[Adamsapple]

Hi all,
I suppose I?m looking for a little advice or reassurance about my little boy.

Adam is 3 years next month and has not said his first word. I don?t believe there is a problem with his understanding and he has reached all other milestones.
Adam is very good at communicating and making himself understood. He is very vocal shouts, squeals, grunts and the usual babbling sounds, and he uses makaton.
His hearing is fine, actually they said it was very good.

So tomorrow morning we have an app with peads consultant to assess for possible ASD.
I was feeling fine about the app, Adam is Adam and I adore him. I felt that if they did decide that there was something ?wrong? a dx would benefit him by making sure he got the help and support he needs.

But this evening I?m feeling very anxious about tomorrow?s app.

You'll find many people will say that even if there is a diagnosis for a condition, your ds is still the same loveable child he ever was - it is only a label and it doesn't change the child, iyswim?

Sometimes a diagnosis can be helpful in accessing help and support (eg SALT, Portage), and even with no formal diagnosis, the paed can recommend extra help for you?

Best of luck tomorrow!

Good luck at appointment. I'm no expert but would say its promising that DS understands, communicates and has met all other milestones.
I think Adam has a wonderful, caring mummy too.

Have they checked for tongue tie/ palate problems? - unlikely but always worth ruling out

Thanks for the replies.

He has't actually been checked for tongue tie but I would assume that if he can poke his tongue out - which he can and does- that shouldn't be a problem. But I will mention it tomorrow.

Thanks for the good wishes.

hi, have you looked at verbal dyspraxia. my ds1 is now 3.8 as has only started talking since he turned 3 but it is very unclear (but getting better) he was being assessed for asd but we have been advised that he does not need it now. He understands, makes himself understood and uses makaton well. He is also very affectionate.
Possible clues to verbal dyspraxia are not being able to suck/blow through a straw, cant like around his mouth, not being able to pucker to kiss.
Could luck at the appointment and try not to worry to much. Ds1 has his paed appointment on his 3rd birthday, he had a verbal dx of asd which shows how much things change in a few months. His 'label' now is expressive language disorder .

Hi, my dd2 (4.1) spoke her first words at the age of 3.5, up until then she only made noises and used PEC's to communacate. Unlike your ds dd's understanding was very poor (due to ASD) so communication was a night-mare, she now has understanding on a 4 word level but is still behind.

It is possible that your DS just has a speech delay, sometimes a speech delay can present itself with ASD traits due to the frustration of not being able to talk. It's a good sign that he has picked up signing, a lot of ASD children do not sign (although my dd2 does).

Dd2 was diagnosed at 3.4 with ASD but she is being reassessed by the pead next week so they can say where she is on the spectrum because they felt she was too young to say for sure when she was 3 and her speech could have caught up in that year (which in a way it has, although she's still 6 months behind).

So many people have said to me (about there dc's) that they can not be ASD because they are affectionate, this is so not true. asd children can be either way, some hate to be touched by others and others (like my dd2) really enjoys cuddles and enjoys people putting pressure on her skin/body.

Good luck with your appointment and i hope all goes well.

Hi Adamsapple, I just wanted to say the my ds2 did not utter his first word until he was 3.1. he had a hge speech delay (expressive) and a mild receptive delay.

He was also assessed for possible asd as he had certain traits which seemed odd at the time.

He is now 7yo and completely normal in every way. his speech took off very quickly once he began to talk (tho he was quite difficult to understand until he was over 4).

I hope you have a positive experience today and that all goes well for you. He sounds very like my ds was at aged 3 (probably a bit more advanced actually!)I know it's a horrible experience to have to go through, and send you all my good thoughts.

I know how worrying this must be for you. Been through quite a similar experience with ds1 (3.9). He has a severe speech delay but is above average with his level of understanding. We've had a multi agency assessment but they're waiting to give a dx when his communication has improved. They definitely believe that poor communication can result in traits similar to asd.
Ds1 could only say the odd word at 3 but now, thanks to a very supportive nursery and speech therapy he is coming on brilliantly. Once they start talking, you'll be amazed how quickly it comes on.
Good luck.

Hi Adamsapple
How did the meeting go?

The app today went well but not great.

Adam had a wonderful time playing with all the toys and games. He co-operated well and completed most of the tests.

After giving the doc a brief history and her first observations of him she said that he didn?t have autism.

BUT after an hour and a half app she changed her mind to he possibly did have autism.

At one point Adam signed he wanted a drink of water, I passed him his cup from my bag and he straight away signed thank you. She asked me if I had noticed that he didn?t give any eye contact when he had signed to me.

She said that the lack of eye contact (which is not all the time) him lining up the bricks and his obsession with wheels/spinning toys together with the lack of any speech were concerning.

So, the doc is coming to his Kindermusik class to observe him with other children, they are going to discuss him in a monthly team meeting, to decide what support they can offer ? Portage was mentioned.
They have arranged for a HV to do a home visit next week and she talked about the need to contact the nursery he will be starting in Sept. to arrange support.

Overall the app was positive- in that he his going to get support.

But my head is scrambled, all afternoon Ive been noting his eye contact and watching to see how often he lines up toys ? which is a lot when hes planning with his trains

Thanks for your support.

Hi adamsapple, am sorry to read about the mixed messages/emotions you got from your appt. Fwiw, I went through EXACTLY the same type of stuff with ds2. We were always told eye-contact was poor, and he absolutely adored thomas trains, including lining them up!

All of a sudden (or so it seemed to me), issues with eye-contact etc were dropped by the paediatrician and team. This coincided with his speech developing really well (which was around 3.6y). At your little guy's age he was totally non-verbal.

Am not trying to give you false hope here, but do feel that delayed expressive langauge can lead to many asd type behaviours.

Will be thinking of you and your little man.

He has a great mummy.

He is still very young and has a wonderful mum who is doing her best to get him the help he needs. Keep posting on here. Its the best support network around

Hi Adamsapple, I'm lingle, DS2 is 4.7, we have been to three appointments like this.

I think they focus on the lining up and eye contact stuff because it might be a clue that he is processing what he sees in a slightly unusual way - like my wee boy - it can be really useful to find out about this sort of thing

I think the fact his understanding and communication are still good are great signs.

My DD has little speech but also not that much understanding (when she listens to you), I am sure she will probably be diagnosed with an ASD-type disorder eventually (if nothing degenerative) and not just a language disorder.

although I am in no way saying all kids with ASD do not have understanding, far from it..my DD is just a confusing case!!

hey fanjo
How is the wee one? You any further forward?

hi there

We haven't had any results yet, is over 4 weeks now.

At her last EEG, when they were shining the flashing lights on her, the technician said "oh I will capture that one, she is blinking and has got "the look", so not sure if that has shown anything (although having ASD traits means she often has a "funny look"!)

She is coming on well except for her speech. She can walk better and is more sociable and cuddly (with adults, not children), but still just babbles and slurs everything and only has a few words.

not sure if I am hoping results will arrive or just enjoying not having to deal with them!!!

Hello,

thank you for all your replies, I sat and read them out to my dh last night. Its good to know that Adam isn't the only one - I know he isn't but sometimes it feels like he is when you see much younger children chatting away IYKWIM

Anyway, after a few of you mentioning dyspraxia I tried to test him by smearing some chocolate pudding (good healthy breakfast ) onto his top lip. He couldn't or wouldn't lick it off so I was demonstrating we will try it again also, I will get some straws today and we will have a play with them.

Thanks again

fanjo
glad she is progressing. If they didnt give you a definitive answer does that mean she will have to undergo further tests?

Adamsapple
Choc pud for breakfast sounds great!

waitingforgodot - not sure, can't think what else they can do, maybe a longer EEG study I think.

Or more ASD assessments.

Adamsapple - choc pudding is a great incentive, I find!! (my DD won't use a spoon unless its to eat choc mousse!)

It depends what you have in mind as autism though - most (all?) autistic children have language and understanding but at varying levels below NT level, But use your own judgement as well as listening to any other opinions.