Suspected Autistic twin boys Age 2

Hi Everyone

joined this community after my health visitor gave me the info. 

so my twin boys are really difficult together or as an individual. I have one that won’t make eye contact and one that does. The one that does is a hand full. He bits scratches punches and head butts. Not just his brother but all of us. 

we noticed something was different with one as he wouldn’t make eye contact and doesn’t answer to his name has countless meltdowns and refuses to sleep he also rocks back and forth and flaps his arms. He is usually a happy chap and giggles and laughs at anything which amuses him and lives a good tickle. However, the slightest thing can send him into a spin where he is inconsolable and we can’t calm him down. A tantrum can go on for quite some time upto two hours or more. Day or night. He cannot speak or say words and repeats the same little gabble he makes all day everyday. He expresses this in multiple ways. Happy sad angry. 

my other little one who makes eye contact and greats ppl happily but he is so uncontrollable. He lashes out and trust me it really hurts and it is so upsetting!! He also has difficulties going to sleep or staying asleep just like his brother. He doesn’t respond to his name either and occasionally he walks on til toes and spins in circles. He rocks back and forth in the pram always. He also recognises when he has pooped but then insists on trying to eat it and it’s so distressing for it to happen we have to change him as quickly as possible before he finds away of doing it.  He also Haida everything and refuses to share and lacks u derstanding of sharing in a possessive way. And if not starts to hurt his brother or anyone else. 

so to give a bigger picture this is based on how they both are. 

neither understand the simplify of instructions and it’s as though language isn’t a thing. So not even so much as look at you when you call them individually or when you ask if they would like a drink, biscuit or chocolate. No recognition of anything at all neither can eat with a fork or spoon. They bite it and then throw it away. One will finger dry food and he takes a bite then throws the rest on the floor such as a sandwich or biscuit. Our other little boy is the same but he refuses to even pick most things up or touch them. And screws his face up. An example is. He loved jelly as a baby u til we encouraged him to touch it. Now he won’t eat it! 
they can’t climb up stairs without crawling and there are a few issues such as they won’t even hold a crayon unless they try to eat it. The idea of using it to draw on paper doesn’t even seem to be something they recognise. No matter how many times we try. Potty training is completely out of the question as they wouldn’t even understand what it is or to do with it. This causes me so much anxiety. How do we even get them to recognise what it is? 

they don’t play with toys how they should and all they want to play with are balls and cars because they constantly roll them over the floor or unit examining the wheels as they turn. 
they cannot be left unattended for even a minute if I need to go to the toilet due to the climbing and the biting. 

neither of them sleep me and my husband are at a complete loss. They refuse to sleep they wake in the night screaming (not night terrors, which we originally thought). If they arnt screaming they think it’s play time and sit in their cots laughing clapping and shouting for hours on end. They will nap in the day but it’s a challenge to get them down. Bed time in our house is 7:30 hoping by eight they are asleep. Every night without fail we are still trying to get them to sleep at ten o’clock. Finally they go asleep between 10-11 but then are awake again in around 3 hours they both wake up at around 6 but never later than 7. 

I cannot take either of them anywhere on my own because of the struggle and tantrums or fighting. If I am with someone and take them to a play ground they don’t understand that it’s time to leave and all hell breaks loose. To the point where ppl stare. I’m not bothered about that one but I’m too busy trying to keep my children from hurting themselves or each other to be interested in other ppls thoughts. 

but please tell me I cannot be alone in this and is there any support anywhere me and my husband are hanging in by a thread. We have no time to relax or gather a thought. It’s just constant. My health visitor is very good. She has referred them to:

hearing

spearhead and language 

portage

early years forum 

Paediatric 

the only ones we have heard from are hearing and it’s been six weeks

is there any help anywhere we don’t qualify for free child placement and most days they just seem so unhappy it’s killing me. I feel like everything I do is wrong and upsets them. It’s breaking my heart.  

Parents
  • Hello!

    Sorry to hear you're having a tough time with it all but I read all of your post and relate to a lot of it with my boys (Nearly 4 and nearly 2).  We had and continue to have a great relationship with our Portage worker. Our eldest is also attending a specialist nursery. The youngest is also seen by a visual impairment support worker.

    In answer to your question: you are not alone with this. I would say having kids is both the absolute hardest and best thing I have ever done. They push you to breaking point and will make you laugh and forget about it all 5 minutes later. 

    I think my best advice would be to let the boys lead you. If they just want to play with balls & wheels let them. Don't force other things onto them. Introduce them by all means but alongside something they are familiar with. Talk about everything, we will talk through our daily routine with both boys so they are aware of what will be happening that day so when we have to stop playing and get ready for a car journey they are already semi-aware of it. (they might still kick off but much less from experience). With food, same as playing, introduce other foods but don't force them to eat it. Always have something they will eat on standby (this will change if they are like ours!). Even if they only eat one thing, it's better they eat than not at all.

    Regarding bed time... no idea. We struggle with this too. Some nights it's easy, some nights we give up and just drive them around in the car until they fall asleep then transfer to their beds.

    Hopefully something helpful in that wall of text. It's hard, I feel for you.

  • thanks for the reply. We do that too at bedtime and drive around when we are too tired to do anything else but even that can take an hour for them to nod off. Is your nearly four year old in school? And how did you get his special requirements met there. Or nursery. It’s making me so anxious to get them into school I need to because they need the development massively but I’m so frightened of how behind they will be. 
    how does portage actually work. I’ve not even heard from them and Will it help to get a diagnosis? 

    are your boys both diagnosed as I’ve read things saying it takes such a long long time and you can’t get the extra support for them in school without it. It’s frightening me. It’s so distressing that how I feel now they will still be in nappies and not able to hold a crayon and Will the school be equips for that. I worry about the oldest of the two because of the biting and lashing out he is a lovely boy but has so many behaviour problems. X

  • Nearly 4 year old has been accepted to our first choice school (after we contested not getting any!) And they have a really good SEN base that with an EHCP (in progress) he will have access to. We started the ASD diagnosis with the NHS when he was just under 2. We're still waiting for that but last year went privately and got an ASD diagnosis for him (and myself this year) which although expensive has helped back up our claims for things. 

    He was referred to his specific nursery by the health visitor, we originally had an incredibly unhelpful one but she left mysteriously Eyes and the new one was happy to refer him there. I think they only take on people that are referred to them, they are very small scale and deal with all sorts. They are setting up transition meetings for us with our school. 

    Portage have been great, they just provide support and are like a shoulder to cry on sometimes. They help us with things to do in holidays and ways to generally enrich his life and make ours easier! But they probably won't be able to help with the actual diagnosis as I don't think they are considered "medical professionals". They are invaluable though your mileage may vary!

    Only our eldest is diagnosed, myself and my wife also are. Youngest has only just started to show some signs he might be but he's severely visually impaired which takes a bit more of the focus if you will. 

    In our nursery there are several of them that are biters (sorry can't remember the proper medical term) honestly it's not something I know a lot about but we do struggle physically with eldest which is being looked at currently as he kicks and hits a lot. 

    In regards to toilet training, eldest just seemed to be fed up of nappies one day and that's when we started (he kept trying to take them off). He was also telling us when he was doing poo's but not wee's. We'll probably try with our youngest this summer when it's warm enough for him to be bare!

Reply
  • Nearly 4 year old has been accepted to our first choice school (after we contested not getting any!) And they have a really good SEN base that with an EHCP (in progress) he will have access to. We started the ASD diagnosis with the NHS when he was just under 2. We're still waiting for that but last year went privately and got an ASD diagnosis for him (and myself this year) which although expensive has helped back up our claims for things. 

    He was referred to his specific nursery by the health visitor, we originally had an incredibly unhelpful one but she left mysteriously Eyes and the new one was happy to refer him there. I think they only take on people that are referred to them, they are very small scale and deal with all sorts. They are setting up transition meetings for us with our school. 

    Portage have been great, they just provide support and are like a shoulder to cry on sometimes. They help us with things to do in holidays and ways to generally enrich his life and make ours easier! But they probably won't be able to help with the actual diagnosis as I don't think they are considered "medical professionals". They are invaluable though your mileage may vary!

    Only our eldest is diagnosed, myself and my wife also are. Youngest has only just started to show some signs he might be but he's severely visually impaired which takes a bit more of the focus if you will. 

    In our nursery there are several of them that are biters (sorry can't remember the proper medical term) honestly it's not something I know a lot about but we do struggle physically with eldest which is being looked at currently as he kicks and hits a lot. 

    In regards to toilet training, eldest just seemed to be fed up of nappies one day and that's when we started (he kept trying to take them off). He was also telling us when he was doing poo's but not wee's. We'll probably try with our youngest this summer when it's warm enough for him to be bare!

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