2 year old with Autism

[EricaPrimrose]

This is the first time I've ever posted in anything like this, but I'm just feeling so lost and so worried, and I need to just write it all down. Any responses would be fantastic.

My son is 2 and 3 months, and since he was 9 months old me and DH have suspected Autism. Just from the way he developed, or didn't really, and how he interacted with toys and just how particular he was.
After absolutely no help from our Health Visitor, who I think just saw two young parents dismissed our concerns, we took him to the family doctor when he was 20 months old.
Doctor (who had Aspergers himself) immediately referred us to the Alder Hey Paediatricians, as he agreed that our son was definitely displaying a huge variety of Autistic Symptoms.
We've had the appointment with the Paediatrician, who again, agreed with us, and is starting the diagnosis process. Our son has to go for genetic testing, MRI, and speech therapy amongst other things.
Whilst it's a huge relief to be taken seriously by medical professionals, especially since he is still quite young, we're struggling more and more with his behaviour.
I'm currently 23 weeks pregnant with another little boy, and although we're excited for Baby No.2, we can't help feeling guilty, like we should focus more on our 2 year old.
He has absolutely no verbal comprehension. He doesn't understand anything you say to him, sign language has never worked (been doing it since he was 6 months old) and he just gets so worked up when he can't communicate what he wants.
He has no danger awareness, and will often drop to the floor then run at full pelt into crowded places. We do have reigns for him, but only my DH can take him out with them, as if he drops to the floor, I can't pick him back up as I have a slipped disk as well as being pregnant. We do take him out in the pram a lot, but he just has masses of energy that if he doesn't burn off, he won't sleep.
We're just starting to feel very isolated, our parents don't seem to want to understand how difficult he can be, and although he's just started 15 hours of nursery, I can't help but worry about him escaping the premises, or injuring himself.
He has so many extra needs that I didn't even realise other 2 year olds didn't have.
I'm just after some advice, from any one who might be going through a similar situation.

Sorry for the long post,
Thank you xx

Hi - my son is 12 now so it's a long time ago now for me but I recognise a lot of what you describe and you are right to reject complacency and denial from others. You may find things move on a little more quickly once nursery starts as if he is anything like my son at that age, it will be very clear to the nursery staff that he is not where he should be for his age in terms of development. Does he have 1-1 at nursery ? It is a colossal shock to see that your child not like his peers but the earlier you can get through this stage the easier it will, slowly, becomes.

Grandparents do typically struggle with disability and illness in a grandchild and we can't always change this - I read a book recently in which the grandparents of a child with cystic fibrosis dismissed the diagnosis and claimed it was just colic and she would grow out of it ! Your set of grandparents would probably sigh at that story and be saddened and amused by the folly - yet that does not prevent them behaving exactly the same way, and this seems to be part of the human condition.

I also have a second son with a similar age gap so I recognise all the confusions and divisions that it brings - it can be like having 2 newborn children, one actually newborn and the other a newly born autistic child, rather than an NT child with 2 years development.

let me know if you have any specific questions - I know it's a big area to discuss

It does get easier I promise. My DS was diagnosed at two and a half and he's six now. I spent those first years in deep grief and dreadful worry for my son.

I can honestly say that I have come to terms with it and everything is much more fun than it was in those early days. I felt very isolated from other families but now I look at some of my friends and wonder how they cope with their NT kids!

My DS went to a sn school from the start which has been easier in some ways as I haven't had fight the education system. Harder in other ways though as I hated the idea that at 4, we had in some ways decided his path.

He talks now and has an unusual turn of phrase that entertains and delights everyone. It was sunny the other day and he told me 'the sun is liking me'. We've changed our lives to fit him and it feels good. There were MANY times that I felt desperate and we still have our challenges, such as toilet training, swearing and physical behaviour. But we try to tackle one problem at a time and have learnt to let go those which are out of his - or our - control.

Re burning off energy, my son used to enjoy squeezing into tight spaces. I used to wrap him in a duvet or he would climb into a box under his bed or he'd squeeze behind my back as I sat on the sofa.

Hopefully your parents will soon start to accept your son's difficulties - I know it took a long time with ours but all gp's are fully on board now and are autism experts.

Thank you both so much.
His nursery have been brilliant, his key person is a trained Autism Specialist, with extra focus on phonics, so we're hoping he'll start to pick more up :)

Our biggest concern at the moment is his understanding, he just doesn't understand a word you say. The speech therapist brought picture cards for him to look at, but he just doesn't understand what he's supposed to be doing with them, as he doesn't recognise the objects. We can't explain that we're getting him a drink/food when we leave the room, and at the same time, he's never found a way to tell us he's hungry or thirsty.
He's such a happy little boy, and is so confident in his physical abilities, which does keep me on edge, I'm just so terrified of him bolting, he did it once before and when we shouted his name and yelled 'stop' he just laughed at us and kept going. Luckily my DH is a fast runner!

You are doing really well already. You have picked it up early, my son, now 3.5years, was dismissed by everyone and I only got him diagnosed 5 months ago. I wish I'd pressed for it like you have done.

That a nursery have accepted him and area able to work with him is fantastic. My preferred nursery refused him.

My son was the same, did not understand anything. In fact only responded to his name at around your sons age. You are very wise to pick this up and there is a huge amount you and the nursery can do to get him to understand. Don't worry about him saying if he's hungry or thirst, or complicated instructions. You can get that understanding. Just go back completely with him, go less than you think the level he is at, and start really, really, really simply! In fact, start preverbally.

For example, does he say any words at all? Does he say any say any sounds?

I've had two SLTs and both of them hadn't a clue really where to start.

Any form of communication is a good start, which can be as simply as any game that your son likes, like 'tickle', or peekaboo. Don't expect or pressure to speak at all at this stage. Just get on his level and build up, slowly, his pre verbal communication. If he likes peekaboo - start playing it, and then wait to see if he gestures to get you to do it again. WAIT for that signal of communication from him, even if it just looking at you, touching you, raising his hand, whatever. This is communication. Keep doing this in all sorts of ways.

Find his favourite foods. If he is saying any syllables, like 'baa' or 'maa'. Have his favourite food, break it up into small pieces, sit in front of him and hold it just out of his reach. If it is biscuit, hold it out and WAIT again, to see if he responds at all, with a look, a gesture, anything. Give him the biscuit as soon as he gestures. If he points, that is fantastic! If not, don't worry. As you are giving him the biscuit, say 'Bi, Bi, Bi'. Do this LOTS. Gradually, you can build him up to gesturing you to ask, saying something like that he wants, even if it is 'Bi'. It may take weeks, months. But it will happen. If he doesn't do anything, still give him the biscuit! Just always wait a give a little time, and then do what you'd like him to do while giving him it so he gets a strong association (e.g. Give him biscuit while saying Bi)

Then after he can put gestures, and then sounds, and then words, to what really motivates him, you can build up to him understanding simple instructions, such as 'give me'. You do this by saying give me and then taking your boys hand and carrying out the action. If he doens't like it, only do it once for very short times until he gets used to it and give him a reward.

The trouble with your speech and language showing him cards, is that he isn't motivated enough. What's in it for him by just saying names?

My son can now ask for a range of things, understand simple instructions, put two words together. He's 3.5 years so still way behind, but before I started working with him it was zero.

Sorry and to add, yes my son still does not really understand about road danger at all. I even had to put a special latch on the door!

I just take him for a short walk every day, about 10 minutes, around the block, where he has to hold my hand. If he doesn't, he gets carried back. I do this every day. If you have a bad back, I'd even just walk a few yards.

The trouble is, I think it is very confusing for ASD kids if they don't know the rules. If I were you I'd never let him go off unless you are in a playground with fences, a soft play area etc. I don't with my son as he just doesn't have any sense and doens't really respond to stop. I'd only use the buggy around shops and not expect too much of him.

Regarding the picture cards (PECS). I am not an expert but as I remember it, the basic idea is to get the child to exchange a blank card for a preferred item - and that this requires 2 adults, one to offer the preferred item and the other to prompt the child to exchange the card ( typically this will be done hand over hand as the assumption is that the child does not understand exchange at this early stage).. Once the child exchanges (unprompted) a blank card for a preferred item, it is time to move on to picture discrimination and to teach the child to exchange an apple card for an apple and a biscuit card for a biscuit. It sounds like speech therapist is expecting too much too soon from a young child with suspected communication difficulties.

zzzzz has some good ideas. It's a myth that pictures are always the solution to comprehension issues. My kid has perfect pitch and his reading was screwed up by an insistence that he was a visual learner who needed whole words to be presented rather than phonics. Nonsense.

I would recommend that learn some ABA skills and research whether or not you might think it beneficial to him and your family.

That's such a fantastic idea, about the humming! He loves singing, and loves hearing me whistle. In fact, I often whistle to get his attention (bad habit from horse riding days!) and it usually works!

Thank you all so much for your help and support, me and DH read through all your comments last night and we felt so much more positive than we have been. We were just feeling a bit like, everyone we told was like; 'Oh my Aunty's, Cousin, Daughters, Nephew has autism, so I know what it's like'.
So glad I posted on here, I can't thank you all enough

That's such a fantastic idea, about the humming! He loves singing, and loves hearing me whistle. In fact, I often whistle to get his attention (bad habit from horse riding days!) and it usually works!

Thank you all so much for your help and support, me and DH read through all your comments last night and we felt so much more positive than we have been. We were just feeling a bit like, everyone we told was like; 'Oh my Aunty's, Cousin, Daughters, Nephew has autism, so I know what it's like'.
So glad I posted on here, I can't thank you all enough

Oh yes. Same here. Daughter gave ds a big development kick from behind and now drags him up from the front. Best therapist I could have hoped for.

So did all your older autistic kids like their new sibling?? I'm so worried about DS just either, not being at all bothered his new brother is even there, or being quite distressed by his presence.
I've just can't think of a way of preparing him for what's coming, we bought him a doll and pram but he's only interested in the wheels and just launches the doll when we sit her in it haha