Twins autism concerns - aplogises long essay

[Mummytofour2021]

Hi all so sorry if i havent worded anything correctly im new to mumsnet and new to asd also... my twins are 22 months old. No speech at all. 😔 firstly both present very differently but both very loving. My little girl has a lot of joint attention and now brings her toys to me when needs help. If i say Ta she will bring what she has over and give it to me but has absolutely no speech her understanding is slowly coming she will come here pass item for Ta and bring toys but she doesnt understand much more sp bring books to me alot and love rhymes on the other hand her brother again no speech and is alot quieter in general. He spins in circles carrys around the remote or hosue phone or anything small enough he just holds in his hand. He wont give anything and doesnt bring toys to play his joint attention isnt great although he will if its something he enjoys like rhymes. He bangs his toys on to everything to bang. Again no speech and even less understanding than his sister he will give kisses when asked and a very cuddley loving boy he does shout mamamamamama when i leave the room without him. Reach arms out to be picked up and leads by the hand. He has some fussiness with eating. I read boys present more obvious than girls not sure how true that is. Im just so worried about them both i have stopped meeting up with friends with babies similar age as i just cant cope with it and finding the not knowing what the future holds so hard. We had a speech therapist private who seemed to of decided my son will be non verbal and that has really deflated me. Not to focus on the negatives they are fab happy kids so loving and both do engage with us both have eye contact although sons can be fleeting. But also both have zero sense on danger and throw themselves off everything and climb everywhere. I know they are amazing and make me laugh every single day but i worry how the world will treat them i know they are still young and wanted to know if anyone had anything similar concerns at this age and have progressed well since?

Oh and just to add neither of them point clap or wave. And have no immitation skills yet x

There is an SEN board on MN which might be more helpful.

Have you spoke to the GP and asked for referrals SaLT, audiology and a paediatrician?

Op I do know how you feel. I had a delayed dc and also had slt tell me they might not learn to talk. I completely get the difficulties of comparing to other typically developing dc.

Every dc is obviously on a unique and different journey. That said, my dc has learned to talk, quirky, slt and others see asd traits, awaiting dx, but has friends and is happy.

There are helplines you can turn to for support including Contact A Family. You can ring their helpline to talk to someone about how you are feeling and they also do listening ear thing where you can book in to talk to someone for an hour for some emotional support. They offer evening appointments as well

Do you have any supportive friends in rl?

Can you get referral to a developmental paed?

I’d get in touch with your HV or take them to a weigh in clinic and speak to them there. That’s how I got the ball rolling with my DTs, although admittedly they’ll try to fob you off until their 27 month check up, it does at least mean you’re in the system so to speak! At around the same sort of age as yours, I thought DS may have been on the spectrum, but it turns out that a lot of his play behaviours were schemas, and frustration due to lack of being able to communicate.

Mine are nearly 4 now, DD is grand, DS require additional support for both speech and behavioural issues but has come on leaps and bounds. At just shy of 3 he could barely speak, but at 3 3/4 he can hold a pretty decent conversation.

Having zero sense of danger or fear in my limited experience of my own DTs is perfectly normal - they’re just bonkers and doing their thing!

Twins can seem delayed because they are twins they can become quite insular (my dad is a twin)

My 11 Yr old DS is autistic. I realised at 2and a half. He was very early to talk and in great detail in terms of vocabulary but all his gross motor skills and social skills were very delayed compared to NCT friend's toddlers. They were very social and interactive and he was only interested in two things, moving a specific toy car back and forth repetitively, and making a humming sound and opening and shutting a cupboard door repetitively. Not getting things out of the cupboard, just swinging it back and forth. He showed very little interest in other people including us parents and it was hard to get his attention. However, nobody else agreed with me, incl school until he was 7, he was diagnosed a year later and the paediatrician asked why have you waited so long?
Gain your HV or GP's view. Do they go to nursery? If so ask them. It is not clearcut from your post whether they are or not Autistic but it is worth asking professionals the question. I do wish I had pushed ahead earlier and ignored school and gone on my own gut feeling. Best of luck

Thank you all so much for your replies reading them truely has helped.. its hard not to let your mind run wild. They are happy and sociable and both love company. They where 8 weeks premature and spent a lengthy time in neonates so they are under a neonatal peadatrician whos been great with them but i do feel he is fobbing me off with regards to my concerns re delays. He said their speech obviously is delayed as they have none but he isnt worried yet until they are aged corrected 2. From my hours and hours of online reading the lack of pointing seems to be isolated to autism? Is that an incorrecr view on that? Consultant will discharge at aged 2 and said he will be referring them on to a new pead from 2. We having be waiting since july for hearing test i rang last week and they were 40 and 41 on the waiting list so hopefully not too much longer. We currently have just started portage involvement. @MuchTooTired thats great that your 2 have come on so well and @MissHavershamReturns thank you i do have a supportive family, but sometimes to speak or get advice/opinions from those with some experience of this i think just helps me xx

Child I know has started receiving support around 20/22 months for lack of speech so sometimes you can get support earlier (Greater Manchester). Speech and delay to be more exact.

My identical twins were born at 35 weeks weighing 4.14 and 3.15. By the time they were getting to two years old, they couldn't walk or talk and they didn''t seem to realise the other one existed. They didn't point or babble either as babies are supposed to do.

I was quite concerned but they suddenly picked up and developed their skills in a short space of time and were fine by the time they started school.

Twins often face challenges in utero and during/after birth (one of mine certainly did) so I just figured their brains needed some time to get over the initial difficulties.

You need to get them referred and assessed.
If there are issues identified you can get and request extra support through child development centre aned children with disabilities team at social e services like specialist nursery referral.
You cannot give prognosis now
But early intervention can only help
And the right nursery placement

@LightSpeeds ah thats so nice to hear so glad your twins came on all by themseleves. I do wonder if i do just need to give them time... they just seem so far behind others now but they did have difficulties at birth one stayed on home oxygen for over a year. Portage think my daughters non verbal communication is coming on well. So hard to not look to the future and wonder/worry thank you all for your comments. I checked the letter from my hv and it says she has made referral to a community pead? Is that what i wanted? Also referral made to SALT but i was told there is around 9 months wait at the least for that

I am a speech and language therapist and also a twin!

It is far too early for any therapist to tell you that your child will be non-verbal. I am very impressed with your knowledge of non-verbal skills , particularly joint attention. This is the key skill that I would be aiming to develop. Have you heard of an approach called Attention Autism by Gina Davies? It is incredibly powerful in supporting early interactions skills.

I'm going to post some youtube videos I think you might find helpful. DM me if you'd like more info.

@taylorwilde thanks so much for your message. Deep down i knew it was too early for her to make that statement but it still sticks with you doesnt it. Very deflating but we keep going. I will take a look at the links you have posted thankyou x

It's far too early - please don't be disheartened.

I remember I was once told I had a "heart shaped uterus" that could lead to miscarriage, even in the second trimester. I was anxious about this for years. As it happened I conceived within one month of trying and carried a 4Kg baby to 39 weeks with no issues! Medical professionals and therapists need to be so careful with their words.

I have worked with children with autism for ten years, Many were not talking aged 2,5 and went on to become articulate, delightful children with many strengths (sight-reading, strong memories, numeracy skills).

My advice would be to take a developmental approach. Don't worry about words yet. Do as many activities as you can daily to build eye contact and joint attention (singing, bubbles, blow up and then release balloons). Be proactive in getting early diagnosis and an Education, health and social care plan (ECHP) when they sart nursey to ensure their needs are met at school and they're fully supported to reach their full potential.

What’s their adjusted age? Were they prem? It’s early days but also there is some evidence that early eye contact correlated with children later diagnosed.

What I will say is that I have an autistic child. It can be tough but his love is so pure that it’s a joy to be his parent even through the challenges. On Mumsnet you will mostly hear how tough it is. It really can be. But parents don’t tend to post when all is going along smoothly. Try not to catastophise this. A) it’s very young, he might just need a little more time, very VERY normal with babies born early and B) even if he turns out to be autistic that is not a death sentence, it’s just a description of his way of seeing the world and doesn’t have to be all bad.

They are 19 months corrected 21 months actual age. Noticed i had put 22 months further up i get mixed up going from corrected to actual age all the time... @Missmissmiiiiiiiiisss hope i havent caused offence. I know it isnt the end of the world if he turned out to be autisic and we love him for who he is, i just get ahead of myself and worry about the future. His eye contact isnt too much of a worry for me he does make eye contact but keeping his attention can be hard.

@taylorwilde oh thank you i will give them a go. I have just got some new bits to try the bucket thing with them.. what is a ECHP? the twins are both in nursery 3 days a week. Sometimes i think being there is good foe them around other children they have no issues going in and seem to enjoy it but i do worry sometimes that 121 time with me would be more beneficial for them.. its hard to know what to do for the best but i went back to work part time and selfishly it helps my sanity to have abit of time away twins really are none stop

Ask your paediatrician to carry out an assessment called 'the early sociocognitive battery".

It is a new research based assessment which reliably identifies very young children who are 'at risk' of developing ASC.

This can fast track your way into services for children with social and communication difficulties.

OP I know nothing about autism but thought some comparison might help.

DS, still on o2 at 6 and still under speech. He did have sounds but lost even that babble due to medical trauma. SLT have been great and he's now largely comprehendable. There's still sounds he can't get.
Portage were frigging amazing and the best part of our week. I credit her with a lot, esp teaching some basic makaton for communication. He's now in mainstream school and average.

DTwins are similar age to yours (2 this month). T2 will spin on the spot until he's so dizzy he falls over. Thru have v little speech and only really T2 starting to copy us, t1 now.
T1 is a fussy eater but loves his milk so I try not to stress (eldest has eating issues and is partly tube fed).
Zero sense of danger and throwing themselves off things is normal here 😂. They climb like baby goats then stand up and if you walk past they fling themselves at you. I'm contemplating removing the fireguard because the fire is less dangerous than them climbing on the guard.
They do not respond to being told no poor to get down except to laugh and go faster.

Community paeds will be great.

Meet up with your friends. They may mimic their peers which will help and you need to not be isolated.

I don't know what diagnosis you'll get but twins do speak later and your private speech therapist is a total dick

@SleepingStandingUp thankyou one of my twins was on oxygen until around 2 months ago. I had to laugh when i read about yours climbing and flinging themselves and also laughing when told no i could of wrote that myself especially T2 she seems to love the words No and Naughty she thinks they are hilarious!! But thank you for your input. I have never actually heard that twins can develop later. I knew to go on corrected age but thats all. Thanks x

The language thing is a mix of them talking to each other in their own jibberish (mine are currently sharing a puzzle and nattering away. Not a clue what they're saying) and one learning to speak and then speaking for their twin like can happen with siblings so you might find your girl spends her time telling you what her brother wants and being right.

Another speech therapist here to say it’s way too early to decide a child will be non verbal. Particularly one that’s already making some sounds, already showing some understanding of familiar instructions and already is communicating some thing intentionally by putting his arms up for a cuddle.

The 3 things I’d have a look at are Gina Davies Attention Autism, Intensive Interaction and PECS. If you can get them started with all these approaches you’d be targeting all areas of their communication and interaction skills.

If possible I’d encourage nursery to look up Intensive Interaction and Attention Autism. YouTube videos are a great place to start.

PECS is tricky to do without professional help though if you’re really keen you could access an online training course yourself. PECS is most successful when done as consistently as possible so you’d be the best person to implement it if possible. I know it can seem a bit backwards that PECS is teaching communication through pictures rather than words but all the research shows that the more we can encourage a child to use alternative communication the more likely they are to talk and if they don’t talk you’ve taught them to communicate in a different way.

I’d recommend trying to find out if there’s any charity groups in your local area that run special needs playgrounds or similar. A lot don’t need an official diagnosis to access and you get to meet other parents in the same situation as well as access some professional advice.

On what basis were you given postage op? Just wondering if there's a way to access other help based on who organised postage and on what grounds / disability?

I do think there's an element of portage that you can replicate if you can get someone to help and have the other twin for you. Have a notebook for the last session and ask her what she thinks you should be doing with them moving forward.

Has anyone any past experience with similar issues with audiology? We took a cancellation today. T1 didnt react to much at all so was deemed inconclusive and has to go back they did say his R ear was congested and dull. T2 they said did well and werent concerned but said her R ear was congested and they said it could be cold like or glue ear but happy to discharge??

Has anyone had a child.not really react to any of the sounds. Is that him ignoring how do they decide on that
..im concerned we will be fobbed off now :(