Does anyone have any experience of the autism spectrum? Really need some help

[wrenster]

This is my first post on these pages, so any advice would be greatly received as I don't know what to do for the best. Apologies it's a long one!

By way of background, I have 4 year old BBG triplets, so life has always been rather tricky! They were premature, born at 30 weeks but are healthy other than glue ear for the ds A. Ds A has always been the tricky one since being a baby, he couldn't even bear to be touched when he was little and has always been a real screamer. A year ago I was extremely concerned by his behaviour and spoke to a friend who has a good knowledge of autism and she suggested some techniques to help me cope, which worked pretty well, but at the moment he seems to be regressing and I don't know what to do for the best for him, or for me.

Essentially I don't know if he is on the spectrum, and my husband is very against getting any kind of intervention as he doesn't want him to be labelled, which I can understand. So please, tell me what you think and any techniques I can use to help him:

Sensory issues - these aren't as bad as they used to be. He used to refuse to wear anything long sleeved, jumpers, coats, trousers etc. he will now but they have to reach an exact point on his arms/legs, even pyjamas are an issue. He won't wear an apron and socks are a rather stressful episode. He doesn't like touching particular textures I.e. gloop and can rarely be persuaded to paint. He hates cooking or getting mess on his hands.

Behaviour - he is easily very frustrated and will scream and scream if things don't go his own way. He is still changing hands when he tries to draw and so his control is not great. He is very rude and grumpy, shouting at me constantly about x,y,z not being right. He doesn't just talk, he screams. Timeout, sad faces, going t his room, simply don't seem to work, he doesn't care and it doesn't stop him screaming. I don't know how to get him to do as he is told ever! His tantrums are legendary and his behaviour is generally very difficult; getting out of the house is challenging

He develops mini obsessions, I think, for security, to particular objects and has to carry them around all day long, particularly with animals. His play is very repetitive.

He has odd irrational (it seems) fears to things like a particular picture on the wall in a restaurant, face painting, new things. He hates change and I need to spend a long time persuading him to try something or accept something.

Learning - he is much slower than the other two at picking things up. He still can barely recognise number 1, let alone other numbers, although he can count to 10. His attention span is very poor and needs constant 1 to 1 if he is to focus on anything.

I have spoken to his nursery and they said everything is fine and won't really go an further than that. I did see some notes the other day which indicted that these issues were also showing up there.

Having said all of that he is a very kind loving little boy who can be delightful.

I am at a loss whether to continue with strict disciplining in the hope that he grows out of all this and then knows how to behave or whether to adapt my approach. The other two dc lose a lot of attention as inevitably I end up managing his behaviour or helping him with all activities. I often feel he doesn't like me at all.

Is this just normal difficult toddler behaviour or do I need to be concerned?

thank you so much for any replies.

I would probably be going to the GP and asking for referral to community paediatrician. It sounds like he speaks ok, which is a very good sign, but there are other things like ADHD that could be investigated. The tantrums and obsessions could be a sign of mild autism, but there would also have to be speech delay, no social skills or gestures (eg does he point things out to share with you, does he make eye contact when talking to you). Does he have any repetitive behaviours like hand flapping or rocking? Make a note of all concerns, using your worst day as an example, then get the GP to refer. Good luck, you have a heavy load with 3! It could just be a late 'terrible twos" but it is worth ruling in or out anything else , as erly intervention is key. Good luck!

I would ask the GP to refer your son to a developmental paediatrician and go from there. A dx won't be given to you overnight, it can be a long and drawn out process.

Your H's concerns re labelling are understandable but sometimes denial (as well as fear) of the problem can play a part in such thinking. Such a stance will not ultimately help your son. Your H needs to know that a label should only be seen as a signpost to getting more help.

Nursery staff are not always trained enough to recognise any additional needs but I did note they have written down that some issues are also showing up there.

Early intervention is of great value. You have valid concerns, you need to act on those asap for your sake as well as your son's.

I think you need to get your head (and your dh's) around the fact that he has special needs, whatever they are. It's not a label for label's sake, it's a fact that things have to be different for him. So you need to stop trying to do normal parenting and judging him and yourselves by everyone else's standards.
Researching ASDs won't hurt, it can only help you understand him and empathise and change your methods to suit. Just assume he has one and work on that basis.
Wrt the labelling thing, it's a bit naive to think he and the whole family won't get them anyway - eg naughty boy, stupid, shit parents etc. An accurate diagnosis is a protection against that, it will help your sanity and give you clout to fight for him and train people how to deal with him. You are a special needs family already, once you are comfortable with that you can become an expert on your child and learn to ignore everyone else who doesn't know as much as you.

I agree with the others, I dont know anything about triplets and their development but if you are seeing big differences between them despite you handling them all in the same way then I can understand why you are worried.

Attila is right, try to explain to you H that he needs to think of it not as a label but a signpost to point people in the right direction to help your child.

Start keeping a diary of any issues/difficulties that he has, what causes them [if you know] and how you deal with them. My diary was one of the most helpful things when Dd3 was being assessed.

Good luck

The not wanting a label thing is very common. The question I would put back to your DH is 'if he doesn't have any interventions, how can he/we change this challenging behaviour?' Because it won't change by itself. Silk also makes a good point - I imagine your DH would be happier to have an ASD label than 'the out of control triplet with the shit parents' label.

Sorry to be harsh. I do know I'm being harsh . But I'm seeing this happening to a friend's DS in RL right now so it's hard to have an objective view - her DS was given loads of support in P1, only to have that support withdrawn through budget cuts in P2 - and school could do that because the child didn't have a diagnosis, therefore his support isn't protected. His dad didn't want him to have a label either

In terms of what you can do now it never hurts to put ASD/ADHD strategies in place, even without a diagnosis. There's a great thread somewhere with lots of links, have a search, or I'll try to find it later (heading out).

Thank you so much for all of your responses and support. It's v kind of you.

I have had an awful morning with him, screaming and crying. I try and help him I.e draw a picture but he then screams because it's not right but he can't actuall tell me what is right. I then set up the castle for him but I didn't put the knights in the right place, so another melt down ensued. He's so particular about everything (even food) that unless it is exactly right he goes crazy.

My friend was here this morning and i was v embarrassed by his behaviour, particularly as the other two behaved beautifully. She was very understanding and kind about it, but it was clear he is very 'different'

I don't think you're harsh Merry Christmas, just honest which is actually what I need people to be, not just polite to try and save my feelings. My mum is convinced there is something not quite right but DH is no where near convinced but he doesn't see what I see day in, day out.

I will start keeping a diary, that's a good idea and then maybe people will see how bad it is. Thanks you again

How is his hearing? You say he has glue ear, and it's amazing how insecure and upset kids can get when they can't hear anything. Has he had a thorough ENT examination? It could be that he has some kind of speech and language disorder, possible related to hearing loss as a littly or not.

Just to add to the great advice above really - IF he does get a diagnosis of ASD further down the line then this can potentially open doors to better support in school which may well not be accessible without a formal diagnosis. He may well be coping ok in nursery, but it doesn't mean that this will continue as he goes through school and heavier demands are placed on him to learn and produce work under pressure. I suspect the fear your DH has about a label is related to a relative lack of understand of autism, which is completely understandable at this stage. The vast majority of us here started out without much if any understanding and have had to learn as we go. What we do learn is that there are things that can help, though often we have to fight for that help. I too would advise a trip to the GP for a referral.

We have been discharged from the ENT clinic and they've confirmed he can't hear at a low register or deep sounds but otherwise it's fine. I would probably agree with this and certainly haven't noticed him struggling.

I am very worried about school already and how he is going to cope there so it looks like I need to start some processes now to ensure he has the relevant help.

You are wise ladies! Xx

Just to push the glue ear point a teeny bit more - we didn't notice DD struggling at all other than her severe speech delay (3.3, no conversation, a little transactional language). When we finally got a hearing test (nine months after first SALT referral) poor DD has a moderate hearing loss, glue ear and the last doctor we saw pointed out signs of scarring in her ears which indicate repeated and chronic ear infections, during which she is likely to have little to no hearing. We were never worried especially about her hearing because she can mimic us beautifully and hear Baby Jake starting from half a mile away, but the audiology team said that her hearing loss would be of varying severity so some days she would hear pretty well and others she would hear like she was underwater. There's some research that suggests that hearing loss/deficits in early infancy can lead to semantic-pragmatic language disorder. You might find that if your OH doesn't like the sound of an autism diagnosis (and lord knows, mine goes nuts when it's suggested about DD) that a complex language disorder might not bother him so much...I'm not in any way an expert, but worth a thought?

Hi,

My DD was diagnosed with ASD at the end of September aged 2.9years. I already had a lot of background knowledge as a teacher, and having a close relative with ASD who was diagnosed very early meant that unlike yourselves I could see the benefits of early intervention. Early intervention usually results in the better prognosis for the child.
So yes, get him referred and seen by a pediatrician. That is your first step since his hearing was checked. And before the appointment write everything that concerns you down, starting from the first time you became concerned.

Hope that helps. And tell your DH that your son will suffer far more damage if he isn't getting the help he needs and people start seeing him as naughty. He will be far better if you know more about him.

Hi wrenstar, I didnt want to read and run but not sure my advice will help you. My DD1 has SN and although no ASD diagnosis she does have sensory issues that are very similar along with CP and hypermobility. When she got to the age of 5 and had started school everything went from bad to worse and we were referred to child phsycologists and OT who explained a lot about what was going on.

OT explained that DD senses were that of a baby and therefore to treat her like one. When she was going mental coming out the bath we were told not shout and lose temper but explain what was going on and wrap her in a big fluffy towel and hold her tight to calm her down. Sock, tights, vests and pants an issue for us so she wears them inside out (bad for my OCD I have to add). We have to let her carry a toy about if it makes her feel secure (bugs the hell out of me). When all kicking off we have to first of all lose our voices as shouting makes things worse. Lots of deep pressure bear hugs help calm her down and rubbing / cuddling a fluffy cushion.

Phsycologist advised us to go for positive critisicm and ignore the bad. We now have a behaviour chart that we use with the day split into 5 and we aim to have at least 3 smiley faces a day. If she is naughty or doesnt do as she is told we dont add a sad face but say something like "lets try a bit harder tomorrow" and leave the space blank. We also use lists with pictures so she knows what is going to happen in a day eg breakfast, teeth brush, hair done and dressed, play date with xx... If we are going to a situation where our routine will be broken we try and pre-empt the situation by explaining what is happening and who is all going to be there. Also small rewards for being good like picking own jammies, going for a bath rather than a shower, reading two books and not one at bedtime

Good luck, I do think you need to go to GP for referral to peadiatric team but admitting you need help is the hardest thing as parents we have had to do. As I say I am not sure if any of the above will help and I wish you lots of luck for the future x

What SilksTalkings said.

Welcome Wrenster, stick around for support along the way, this is a great place.

Handywoman xxx

I could cry you are all so helpful thank you. Jellycurls, lots of issues sound exactly the same as yours and I find it very hard not to shout when even the most simplistic of tasks is met with screaming. I think it's v hard to ignore the bad behaviour too as the other two ask 'why can x do that' and you don't tell him off. I don't want to have different standards but I need to make more allowances I feel for him being so different. Tonight he refused after a lot of screaming to take cough medicine as he has never had it before even though I explained to him patiently several times that he would make him better and his brother and sister were having it. He is still coughing away in bed now :-(

Will definitely have a look at that book too.

Thank you again xx

Oh yes welcome to the cool club!
Another good book just for your own sanity is 'Shut up about your perfect kid.'
Something to think about is that ASDs are usually genetic - any eccentrics on either side of the family? Have heard many many tales of dads in denial because they are recognising themselves or v hung up on trying to appear normal because of their own issues.

Also it's perfectly ok to explain that things have to be different for him because he doesn't understand things as well as them. They know he is different, they will want reassurance that they are not doing something wrong hence getting told off more etc.

My husband wasn't against dx but didn't see it at al, and took a lot of talking to, pointing out and seeing it all written down, it's quite normal.
I can only agree with the wise ladies here and again ask for a referral to a developmental pead.

Autism and sensory processing difficulties are very similar, but Asd is alot more of the social and language issues. My dd2 has both and the cross over of behaviours are very close. Do look into both.

The twin/triplet thing can be quite useful. Harder to say just wait and see or blame parenting, when you can so easily display your same-age, same upbringing, but neurotypical children.