Baffled about DS's progress with speech and socail skills.

[genieinabottle]

Hi, i've name changed a few days ago (used to be msb)

Last year we have been told by comm. paeed that DS (4.3) presented with autistic features/mild asd. DS has moderate/severe speech delay, play and social skills are also not age appropriate.
Earlier this month Autism team paed at Cahms after our pre-assesment interview confirmed more clearly what comm. paed told us. She said DS has autism.

I am at lost. All last year i was pretty much convinced that DS had asd. Now i'm not so sure!! DS has made some improvements recently both socialy and with communication and shared-attention. Although these areas are still behind it is clear it has got better.
In the last 4 months his speech has improved and he clearly wants to communicate. He is starting to do smalltalk, i'm aware it can often revolves around cars ,trains, or whatever he is interested by at the time, but he will try to carry on a simple conversation with us about other things and he frequently makes in context comments about all sorts of things.
On several occasions he has mentioned his sister when he has been given a treat to remind us to give her one too.
He is also now trying to be more independant with self-help skills, but needs to be supported and reminded of what to do.
His imaginative play is delayed but again we are starting to see a few improvements, he has pretended today that his long tower of bricks was a 'chu-chu train robot'.
He parallels play a lot with his peers but seems to enjoys more their company, he plays less alone.
He seems to be starting to understand the concept of sharing when he is supported, he now can get turn-taking quite well and can wait for his turn for a short while.
He still has some sensory issues with loud noises, bright lights, foods, textures and often has phases where he does a lot of sensory seeking play or behaviours, he also has vocal stims and toe-walk/wanders, usually it is very difficult to get him to cooperate/interact appropriately with us when he is like that.

I'm not saying that all of the asd traits DS displayed last year have gone, but defenately many have improved.
I have looked at Dyspraxia and i am finding that DS ticks many of the boxes.
I've also read recently on a post on MN that dyspraxia and asd in young pre-schoolers was hard to differentiate.
I'm at loss... of what to think.

Has anyone seen similar improvements as above in a child of similar age as my DS, and still ended up with an asd dx at the end of dx assesments?

Maybe i'm trying to clutch as some hope here, but as i don't know any other child with mild asd it's hard to get an idea about how mild asd chidren can progress iyswim? and it is useless comparing him to his nt peers anyway.

I can only go on my own experiences with dd, so may be different but it is possible to make improvements in social skills. DD1 is now 7 and she does try and start convo and will share (on her terms) but is mainly quite hard to spot in a class when she is support and not feeling stressed.

This s why they have social skills groups and social stories as it is possible to make marked improvements.

My friend has a son who was dx at 3years and had lost all language and spent all day stimming, he has made so many improvements, and although finds expressive lanaguage hard and its clear he has ASD he has really come.

Keep doing what you are doing, its clearly working

Hi

I think it is hard to distinguish the symptoms of dyspraxia and Aspergers in particular sometimes. The list of symptoms are so similar. I think it is a question of emphasis i.e. the emphasis with dyspraxia is on planning and motor skills and with AS on social skills and communication.

My son is nearly 7 and has friends, shows empathy, he can share, he is learning to communicate and develop age appropriate social skills but he almost certainly has an ASD.

I think the spectrum is so wide that it encompasses so many variations and that it is possible for a child to have more problems with one part of the triad than another. However, it is also true that children can develop these skills as they mature but are more likely to be specifically taught than to learn through just 'being'.

If you want a second opinion, you are entitled to apply for one to a tertiary (specialist) clinic. You will need your CAMHS team to back this but that usually is not a problem. I can give you the names of some centres if you like.

Hi, you know my DS (4.7) was diagnosed as classic autism, not mild at 2.5. He has come a long way since then. He tries to play with his peers, will take their hands and ask them to play with him, he just does not know how to play the same game afterwards or have the language skills to continue with the game, so his peers gets bored with him. But he is great with kids younger than him who are at the same language level as him, he joins in with all the games. He was always social with the adults, so that was never a problem. He is still not able to have a conversation, but he can talk about subject of his interest like your DS. In fact, he speech and development are progressing as if he is reaching all the milestones late, but does not have any problem with doing anything. Some of his language is coming sponteneously as well and his imaginitive play is getting better. He is also displaying age appropriate play skills.

Despite everything and all the progress, we don't want to go back into 'is he or isn't he' question. We recognise he has a problem with speech and social communication and although he is improving, he is not like DD who is 2.9 and took me only a day to potty train and already asking questions and understand pretty much everything. DS on the other hand just started answering why questions, whereas DD did that at 2.5. DS still does not ask questions like what are you doing or where are you going, why are you sad (DD asked me this morning when I was lookiing tired from lack of sleep). We kind of feel at the end of the day 'what difference does it make if DS has a dx or not if it turns out all fine?' We can always apply for the dx to be removed or ask for a second opinion when we think he has caught up, until then lets try to give him all the help he needs.

I have taken on board all your replies, thank you.

I thought i'd mention another area of good progress is with non-verbal communication, he now looks at us when playing waiting for a subtle sign such as a smile and a nod to know it's his go. Similar when we are out and about he looks at us and picks up on some non-verbal signals.
I had come to believe (from reading not experience)that this kind of thing was near impossible for a child with asd to see.
Yet he is showing natural progress for this.

I'm not denying he still has many delays and there are nothing in his behaviours that indicate asd, but he is now showing more typical behaviours alongside the asd behaviours, iyswim?
Maybe part of my confusion is due to the fact that i expected less from him, i had come to think he would'nt be able to do this or that and now he does i'm taken aback with surprise.

Although paed did confirm verbally that he has autism, he still hasn't done the full assesment yet, he will be doing the ADOS amongst other things sometimes in may.
So will have to see what comes out of it in terms of dx.

Hi, its so great to read your post , your DS is so much like dd2 (from what i have seen in your other posts), it sounds like he is doing so well. Dd2 developed speech almost overnight after being non-verbal until 3.5, she will be 4 in 4 weeks and is now sat on the sofa talking to herself using 4-5 word sentaces, her communication has also come along really well and she has started asking questions (only in the past few weeks) such as 'where is *' and 'can i have **', last night she asked to sweep the flour by saying 'dd2 sweep please' .

As you know, dd2 was dx'd with ASD just before she started to talk (so at the time she was clearly autistic), luckily the pead was worried that her speech may change and he didn't want to give her the wrong dx so he booked her in to see him again in April this year he also mentioned the possibility (if her speech improved) of getting a dx of Aspergers rather than ASD/HFA.

Our GP has also mentioned getting dd1's dx of AS removed as she gets older so a dx is not always final.

Well done to your DS for doing so well, i'm sure he will continue the progress. Having dd2 home this week has made me realise how far she has come since christmas.

Marne, my DS also ask where is and can I have questions and how many or what, has been for over a year now, but he seems to do it for interaction with us rather than being interested in the answer whereas DD is actually genuinely interested about the answer.

DS also understands body language, so he waits for a nod from us whenever he asks for something, or when he is doing something he looks at our face for approval. He communicates so well that although speech delay is obvious, asd is not. He is definitely progressing towards the right direction . We also feel that lots of his behaviour is normal rather than asd related, but that niggling feeling does not go away specially when he is having a bad day.

Ds1 'permission seeks' - ie waits to be told to go ahead a lot. He also uses the same sort if method to tease, so pretends to do something such as get a biscuit - by just touching the item then looking to us for a reaction. If I say go ahead he'll take one, if I say no he'll laugh and maintaining eye contact carry on pretending to take said biscuit. This can go for a while and ge finds it hilarious. He doesn't take the biscuit unless permission us given though.

He's severely autistic though (10, non-verbal). I have no doubt about his diagnosis. Autistic children do a lot of things they're not meant to.

Have a think about what the diagnosis will bring you in terms if support (or not). I think that's more important than what it supposedly says about a child.

Yes SaintdT, that is very true. Thank you for sharing that bit about your DS1. He sounds quite a character.
I simply don't understand why i constantly have to reassess where we are with ds, it's like i'm looking for something concrete that would prove totally that DS cannot possibly have asd. I know it sounds incredibly silly and a good waste of time too.
Because no matter what seemingly typical behaviour DS will be able to do today or tomorrow it doesn't change the fact that he has problems with language, social interaction/imagination, and sensory and repetitive behaviours.

Such as this afternoon, in a shop DS was highly excited believing that he was playing hide/chase with a boy (about 7 y old), DS kept saying 'boy' and was hiding and looking towars the boy laughting out widly, when i looked round the corner the boy in question was playing and joking with his own sister, he was not paying attention to DS at all.
Then DS escaped and run off, i found him crouching and looking at the escalator doing his twirly fingers. All this not so typical behaviour...

A % of children who get a PDD dx, hyperlexia or HFA dx in USA are reported to make big improvements around 4-6 - ie the sort of leap a typical child would make at 2-3. Thats not to say the original dx was necessarily wrong just that they are in the cohort who may end up overcoming many of the difficulties of their autism / PDD. Most tend to have some ongoing issues eg with language comprehension, understand social rules less, may be "geeky" etc. They don't know whether children who do better were given wrong dx, were more mildly affected / responded better to treatment / had better treatment but there is a % who have a similar story to your DS. I think celebrate the progress and don't get hung up on the dx.

Probably your child is more mildly affected and getting good intervention from lang unit. and as combination is making optimal progress. Its what those of us who don't get lang units / spec ed, SALT etc are yelling about - early intervention works but many of our children aren't getting it.

Most children with normal IQ will make natural developmental progress - my LA relies on it so they can do very little and say hey but all the children are making progress. And at times eg when language begins to fall into place they can make big leaps, but I don't think that means they weren't ASD to start with.

But I agree as a parent no-one will say your child could still make great progress, they have low expectations - outside ABA no-one even talks about good outcomes openly as a possibility. Actually our clin psych did say that in a way - he said he would never say where a child was on the spectrum at 2 because some made huge leaps around 5. He said one child was non verbal and stimming and the next year he reviewed him and child opened the door and said "hello X come in" - so he said now he never makes predictions at 2. I don't think what you are describing is outside the experience of a cohort of ASD.

No its not a daft thing to do. It's a completely normal thing to do.

FGS I've ended up researching severe autism to show it's not as people think (and it isn't!)

I think the problem is diagnoses are loaded. When you reach the grand old age of 8 years post diagnosis though (as I have) you realise it's just a game. Diagnosis tells you exactly nothing about a child. Nothing at all. But it can help you to get help (or in some cases it can hinder). So if you have doubts about the dx, then tackle it in a different way. Ask what help your child needs/where you'd like them to be educated/whether you want medical tests/input from social services? then if the diagnosis will help go for it. If not hold off......

Thats the thing when our dc are given a dx, they are suddenly expected to conform to a set of rules & expectations associated with that dx.. But they are people & individuals & personalities & nurture also have a part to play.

The thing that sticks in my memory at ds2's review, when the teacher said "Oh we have seen some huge leaps in certain areas lately"& suggested reducing his support.

His psych was very quick to tell her that with ASD development is very often disordered rather than just delayed & development can often come along in short bursts & then plateau again for a while, so support should not be reduced.

Not saying your ds's dx is right or wrong, you are his mum so go with your gut instinct but, give him/you time the most imprtant thing is that he gets the level of support needed regardless of dx.

Hi
You could be talking about my ds3 who is 4.4. Diagnosed 2 years ago, since then he has made massive progress esp since starting full time reception in sept 09. i have constantly worried wether he has the correct dx and posted on here a while ago as I really struggled with it. He is still behind for his age though and although he is doing really well, the dx has enabled him to gain access to the help he needs. He saw an ed pysche last week who said he was "a bit autisticy with developmental delay" so although ASD is official dx I am really focusing on his specific problems as opposed to the dx itself. I will take him for another opion at some point but feel like that would not be best for him at the moment. am reading a book y Stanley Greenspan at the moment (another mumsnet user recommended it to me) and it has really helped with understanding a child's development. Don't know if this has helped in any way but it is good to know that you are not alone!

Thanks. Yes it does help me to know and be reminded that i'm not alone going through these ups and downs all the time. I never know how to stand when it comes to DS anymore ...one minute he seems to be progressing very well the behaviours are down and i start panicking maybe getting a dx isn't in his best interest, then he has a very bad phase when everything with him seems to go pear-shaped and i can't wait for a final dx and more help.
God, i sound a bit manic, don't i!!