My twins and ASD

[nomorebuffalo]

I've got twin boys who are about 2.4 but were born two months premature. Twin 1 was my main concern from about the age of one, could be quite distant with me, occasional eye contact and showed little interest in toys. Twin 2 had none of those signs, was smiley when he saw me, good eye contact, was quite clingy with me though and seemed shy with strangers.

Between ages one and two some things improved, both boys crawled and then walked. They played with toys although Twin 1 was always slightly more happy to play alone.

During this time, they were seen by a Physiotherapist every few months (matter of routine, no concerns) who has since referred them to an OT and ST. All my fears about Twin 1 kept pointing to autism, but I never felt something wasn't right with Twin 2.

Anyway we saw a Hospital Paed when they had just turned two who was reluctant to say what she thought. When we pushed she did agree that from what we told her she would not be surprised if Twin 1 was on the autistic syndrome but didn't comment on Twin 2.

Since then they have both started weekly speech therapy and Portage. Twin 1 has never said a word, Twin 2 kind of says' Daddy' and 'again' and babbles a lot. They are both looking more and more like toddlers, yet seem so babyish.

Thanks for reading if you have. I'm not up for talking to friends yet. I can't stop thinking of things, thinking way too far in the future and starting to cry. It feels like I've been punched in the stomach and I can't shake the feeling off.

What more should we be doing for them? Do you ever feel ok about it, accept it if your child/ren has ASD?

nomorebuffalo.
First off, I'm sorry that this has happened with your darling boys.
I think the time of diagnosis is appalling difficult regardless of the level of fears you had beforehand. Realising that you are not mad, or fussing and that there truely is a problem, is devastating.
So be kind to yourself.
Talk to friends when you are ready. Some wont know what to do or say and some will be great.

It sounds as if you are already doing lots for them...you mention Paedx, Physio, OT and Speech.
Learn from them; but also be aware that professionals are experts in the field, not experts on your DC. You will become the expert on what exactly is the issue with your child.

There are lots of reading resources if it turns out that twin1 has ASD. Lots of support availabe here and elsewhere.

Do I feel ok that DS has ASD? Well, if I had a magic wand, I would take it away. I would give him all the skills that he needs for life.
But, I cant. I love him regardless. He is the most compassionate, empathetic and loving person possible. I was very angry about it at one time, but it didnt help.

A virtual hug seems appropriate. I wish you and your boys well.

Thank you so much for the reply and the hug porridgeLover

I've been thinking about posting for a while but for some reason I needed to get it out today. My Dh is supportive and positive but probably a bit in denial about the whole thing. Its a very different week for us both as he is out at work and I am the SAHP. I've probably backed away from from friends, as spending time with them and their dc's only reinforces my fears how far my twins are falling behind developmentally.

Your son sounds fantastic! What lovely qualities he has. I hope I can describe my boys in the same way in years to come. Best wishes to you both.

I have twins, and the eldest (boy) has ASD. It is such hard work anyway with twins, that it can seem like the end of the world to have another problem added in (but we only had a diagnosis at 8) He was always a little "odd" for want of a better word, but he was cuddly responsive, chatty, played with his siblings. He preferred to play alone quite often too - that was one of the early pointers. Fussy eater, not a good sleeper, and v interested in just a few toys and games. He is 10 now, and I always look back and think what a delightful little boy he was (he is still delightful but there are obviously some issues with dealing with ASD, communication and behavioural. It helps us to know the best way to handle them, because we now know his perception of the world differs slightly from other children. But I would say that he was the most delightful child, so interested in the world around him, enjoying outdoors and family life, and we always cherished him for all the things that were odd/special about him, and have somehow adapted to him. He was just "....", that was his character. It was a surprise when we learnt that a lot of the things which made him special turned out to be characteristics of other Asperger children (the train obsession, the playing alone, the talking very seriously, sensory seeking stuff, fussiness over textures, light sleeper)

I just wanted to reassure you, that with any early diagnosis comes lots of fears and forebodings, as well as the issues themselves, but it doesn't have to be a diagnosis which should fill you with dread, just a different path you are going to tread with that child. We had no early diagnosis, so I suppose we were blessed in just enjoying him and learning to live with him in the early years. I would agree with words "the most compassionate, empathetic, loving person" about my son. Sometimes when I find his behaviour difficult atm (and it is not that difficult really, just some situations which are difficult, rather than him) I remember what I adored about him when he was two. I think if you can build that bond now, it is a great help.

nomore, you're welcome.

I would have been the same about posting; I had to make sense of it myself before I could ask anyone.
DS's father would have had a similar reaction...refused to see my concerns, still doesnt involve himself in DS's therapy.

I came back on to re-iterate what swanthing said. If there's one thing I'd like to tell myself when DS was 1 or 2yo...build the bond, be connected to him, leave my fears and concerns about 'fixing him' at the door and love him to bits. I'm sure you do that anyway, but you cant overdo it.
Best of luck.

Nomore, have you heard of the Hanen book, More Than Words? It's a great resource and none of the interventions in it would harm your DTs even if one or both don't have ASD. All the appointments and assessments by professionals are necessary, I guess, but most of the time any recommendations they make are carried out by you, so while you are waiting for advice, this book is brilliant. It was recommended to me by my DS's SALT and many on this board have used it and found it very helpful.

I think you are right porridge. You can't overdo it, especially when a child needs something more. I think twins need a lot of extra love and attention anyway, regardless of prematurity. I think the last thing you need to encourage is independence, as they get so much more time when they aren't fussed over...

The other important plus is that your twins will also help each other communication wise. Ds learnt such a lot about playing and socialising from his sister, and his older brother, and of course, she was very fond of him, which helped!

I don't know if you have ever posted on the Multiples board, I know I haven't especially frequented it, but I wonder whether you mightn't find a lot of twin mothers suffer from a delayed reaction to the miracle of twins, and the shock of a premature baby takes a long time to process, years even. I mean joy gets sucked out sometimes and you can feel just in a state of perpetual red alert for many years. And when you meet friends with singletons or non-premature infants it is difficult to relate to them.

At QCH (Queen Charlotte) in 2000 they had a twin expert, who used to advise on lots of stuff. I went to her when my twins were about 2.5, because I wanted to wait to send them to nursery until they were nearer 3 (it was a termtime Montessori which liked to take kids from 2.5, very popular, and difficult to get place at etc, well thought of, pressurizing me to send them at 2.5) and wondered what she thought. They were talking well, but she said, the longer you leave it the better for their S & L. Which is interesting - I suppose what she meant was the 1:1 settign for twins is very important, because it is only a 1:2 setting!! So that might be something to consider, keeping them at home a bit longer rather than putting them in nursery. Ds2 loved that nursery, in due course, but when he was a bit older. He loved the routines there; I think less structured free for all play would not have suited him at all in a nursery setting.

Ds2 thrived on being outside, and he thrived on books and music. What he did not thrive on was being asked to do anything sedentary for too long, which required too many fine motor skills...like handwriting or colouring. He loved drama and imaginative play, pretending to be characters or dressing up, or entering worlds of soft toys. He had a lot of empathy with soft toys too! He made a lot of games based on television characters. He was interested in all sorts of non-fiction stuff too, museums, history, science. This for a child who was not able to write at all when 5!

swanthing Thank you so much for your posts. You are right, I am fearful of a diagnosis as it feels like my worst fears being confirmed. As much as early intervention is important, I feel angry that what should have been our first lovely few years together are being clouded by this hanging over us.

DT2 was so clingy for months I feel worried that DT1 felt left out at times and that I have made him feel isolated. When we do get some 1:1 time I do try to over do the attention he gets. It's just so hard with twins, you always feel like one of them is being short changed.

Thanks for your post about Nursery. I intended waiting until they were 3 but have recently been thinking about trying them earlier in the hope it might bring their speech on. I will give it some more thought.
I have never been on the multiples board, I will give it a look.

Your son sounds great! It's so encouraging to hear of his imagination, dressing up and love of books and music.

Did you ever feel that your DS's twin had ASD?

Porridge Thanks again for your posts, I really appreciate the advise about not trying to 'fix' him.

Ellen Thank you for letting me know about More Than Words. We recently bought it and I am working my way through it. Bit over whelmed at first but some great tips we have started to use.

Thanks again everyone. My first post on these boards, but I'm glad I did it!

no, dd is entirely NT. But she was very clingy!! She needed lots of attention too! She behaved much worse than ds2 when she was between 3 and 5, and tbh she was the problem. For example, she refused to walk anywhere, liked to be carried at all times (she is now in the Netball team, and very lively), screamed a lot and was generally a bit frustrated by living with two little boys.

I think twins take it in turns to ask for attention sometimes. Often one will behave in a demanding fashion when the other is being as good as gold, and then vice versa. The lady from Queen Charlotte's said that twins can be very jealous, however devoted they are to each other. This is true of any siblings but because you have them both at once, you never have the benefit of hindsight with any developmental stage.

Whether ds2 has asd or not, his development will be enhanced if you treat him as though he does. Plus it's much easier to treat siblings the same , less complicated and works all round. [admits to makaton-ing all the dc age 2-9 whenever they don't/ can't listen and even to putting them all to bed early with bottles of warm milk last night]

swanthing That's great all is well with your dd. I do have concerns about DT2 but am trying not to over analyze everything he does and stop looking for signs of ASD.
The twin lady from QC sounds like she's got it right. Mine seem to view each other as competition for attention, but they don't act very keen on each other most of the time.

maria Thank you for your post. Both boys probably are being treated that way as they both are having ST, Portage etc. It's just DT1 has always shown more signs of something not being right. I always thought DT2 seemed ok, just behind developmentally but now I just don't know.

Ah, nomore. Glad you already have More Than Words. It was such a godsend to me when DS2 was small, it was my bible. My DS2 was DXed with ASD at 3.5 and until More Than Words I hadn't read anything about autism that sounded like him. It was hard enough with 3 DSs spaced out by a couple of years each, can't imagine twins. Agree with Maria that treating them both as if they have ASD won't harm them in any way and should help them to develop. Are your DTs identical?

Hi

I have twin boys also , DT1 is NT and DT2 was diagnosed with Aspergers last year aged 10. DT2 had issues with attention and processing, both sensory and auditory since very early on but overall although I suspected he could be on the spectrum, nobody else seemed to think so until last year. He has many non asd traits so it was not a straight forward case. I knew pretty much from the start that DT2 was different and worried myself sick (still do but surprisingly since the diagnosis the elimination of the ?is he/ isn?t he? has made life a lot easier). DT1 had some ASD traits , but I have to say I never once thought he was ASD. He had obsessive tendencies and could go on and on about a subject without a care in the world that he was boring us all. He knew the names and model of every car on the road at aged 2 by just seeing a tiny bit of a car. However I knew that he was completely NT as he had such age appropriate skills in everything else and just well fitted in with his peers. DT2 didn?t have any obsessions at that age but I knew that there were enough niggling issues to warrant concern . My Dt?s are not identical. The worry of not knowing is really the worst of it.
I agree with treating them the same although its easier said than done. DT1 is jealous of DT2 in that he says Dt1 gets more attention than him and everyone listens to him . He is probably right as when DT2 does something ?normal? we probably make a big deal of it and overall are more sympathetic to his needs (although I get crosser than I should with him also at times due to frustration) . No great advice I?m afraid bit I can empathise with the worry . Stay away from Mr Google . honestly you could go around the bend and diagnose your DTs with pretty much anything and I speak from experience

Ellen Our ST is introducing us to another ST who specializes in More Than Words in the next few weeks so hopefully that will be beneficial. No my twins are not identical, which gives me hope as far as ASD is concerned.
How is your DS2 doing now?

paranoid Hi, thank you for your post. I'm going round in circles with what I think about DS2. If he was a singleton I never would have had any gut feelings something was wrong. I was told they would probably be late to talk as twins often are, and all areas of development would be delayed due to them being born at 30 weeks. But now I don't know when it stops being delayed development and starts being autism if you know what I mean. Is delayed development always autism. . . I just don't know.
You're right about keeping clear of Google though. It's been a mixture of helpful and harmful in this case. Thanks again for your post, it was helpful to hear of your situation.

If you can get on a Hanen course that would be great! My DS2 is 13 now, in MS secondary school with full time 1:1 and doing well. Still pretty obviously autistic, but very gorgeous.

So your DTs have only a normal sibling chance of both having ASD. My DS1 is geeky, had speech delay and is socially a bit inept but still NT. DS3 is pretty quirky, but gets away with it.

I'm glad you've found this board, it's immensely supportive with only the occasional spats!

Hi Ellen, sounds like you have got 3 lovely sons! Great to hear your DS2 is in MS and doing so well. Gives me hope that my DT2 may be somewhat like your DS1 or DS3 but who knows. Thanks for taking the time to post, glad I found the board too

just come back to say one more thing....

My twins only attended nursery in term time in mornings (3 hours sessions) and tbh ds2 only went to Reception for morning sessions till he was 5, so again I think he needed all that extra 1:1 time, rather than extra socialisation. At this stage he wasn't diagnosed but teachers told me he could not cope in afternoon session after morning's concentration ifysim. He needed to be running around outside or just playing quietly at home. Other people may say contrary but I think any earlier in nursery or longer hours would have been counterproductive. His speech has always been excellent. We sang a lot to the children from babyhood. It is a very good way of dealing with twins too as it is group communication and lots of turn taking without tears! He also absolutely loved the Brio train track, and used to communicate a lot with his Dad whilst making it - just one example of pro-active play which helps an ASD child. Hide and seek, treasure hunts, all great favourites.

Thanks swanthing, you're giving me lots to think about! I will leave the nursery idea for now and concentrate on things at home with them. I've upped my nursery rhyme singing to them lately. As you say it seems a good way of doing something all together, and might help with their talking. They usually sleep at different times during the day so I am making sure the awake one gets plenty of 1:1 attention then too.