Autism - looking for some advice please

[BabySpider]

Hi. This is my first post in SN though I hope you don't mind but I've been lurking for a while now. You all seem like a lovely bunch so I think I'll hang around!

My DS is 2.10 and has this week been referred for full autism assessment. We started the referral process in July, initially to SALT, as we were concerned about his speech. We've now been doing More Than Words with a private SALT (as the NHS SALT discharged us...) since July. We've seen some good improvements and he's now saying 2/3 word sentences and is actually using it to communicate. He's not at the conservation stage yet but our SALT is confident he can get there.

He does certainly have some autistic traits but the paed told us she'd expect problems with sleeping, eating, touch etc. and he doesn't have any, though I know it doesn't affect any 2 people the same way. He has good eye contact, points and follows a point (though this did come late). He doesn't really do imaginative/pretend play. Play tends to be models he's copying from us/others (like flying his aeroplane through the air) though there have been a few occasions of pretend play that I'm convinced came from his head. Although he has always had good eye contact and we do have joint attention, they say he doesn't have enough joint attention. He has some stimming type behaviours. He likes to run his buses back and forward and watch the wheels and he does sometimes look at things out the corner or his eye. He also isn't great at responding to his name, though he will do it sometimes (though he always hears "biscuit" or "cake"...).

This feels like its turning into an epic post so I'll try and get to the point!

• Is there anything else we can do at this stage to help him? More than words is going really well and we'll continue with that.

• I was reading the Tinsley house thread and started wondering about supplements, vitamins etc. Does anyone have experience of this? Is it a good idea? He has been a bit fussy with food recently. He still eats a wide variety of foods; but he might eat something today then refuse it tomorrow.

• Does anyone know what age the child has to be for Tinsley house? I've been reading the Robin Pauc book and all the testimonials seem to be school age children and older. I'm not sure DS would qualify anyway as he says he can't help autistic kids though he does talk about autistic traits being treatable. Does anyone know how he decides if he can help an autistic child?

Thanks.

Hi Babyspider, and welcome.
Someone more knowledgeable than me will be along soon, but just wanted to say that it's great that your DS is being assessed os early.
It's so positive that your DS has 2/3 word sentences, that's brilliant.
I suppose in terms of what your pead is saying about sleeping, touch and eating; I'm not for one moment claiming to have more knowledge, but I would disagree. In saying that, I would of course point out that I only have very limited experience. My DD has no difficulty at all with sleeping or touch. Her diet is quite restrictive, but my DS (NT) is also a picky eater, to a lesser extent.

I have no experience of Tinsley House, but many posters here recommend ABA. I haven't done this formally. There's a book by Scharamm "Motivationa and Reinforcement", which I got from Amazon, which explains the principles of ABA.
I have the Hanen book too and it has really helped me with DD.
All the best to your DS and you

Sorry about all the typos, I am not good with DH's laptop!

Hi Babyspider - interesting to read your post. We've just started with TH for our ds 4.0 - I'm on the TH thread. I asked Robin about our ds2 who is 2.3 and not talking yet plus has other signs of possible dd. He was so reassuring and suggested we start the chewable fish oils (see their site for link, he thinks they are better than the Eskimo ones), other supplements as he comes of age (I think 3) and the spinning chair exercise. He's on the diet as we all are. I recommend calling Robin for a chat - hes very approachable and easy to talk to. With regards to autism, I think he treats some children, but it depends how far down the spectrum they are. Good luck xx

Thanks for your responses! We were away over the weekend with the in-laws so I haven't been able to reply.

marchduck - yes, it is good that we're getting in early, and he is still very young so I'm hopeful we can make a difference. My DS has been a little fussy with food recently (he used to eat everything!) but I've been putting it down to 2 year old fussiness rather than a potentially autistic trait but I might be wrong. I think that's the worst thing about working towards a diagnosis; I find myself analysing everything he does. Makes me feel like I'm missing out on enjoying him sometimes.

Ruggles - thanks for replying. I've stared DS on omega supplements, not the ones on the TH website but as he's taking a double dose, it won't take long to finish them then I'll try the other ones. I tried disguising it in his juice but he wouldn't drink it so I tried it from a medicine syringe and he took it fine! I'll read up on the spinning chair exercise. I've only just downloaded the brain food book. I've read Is that my child, but it doesn't have the exercises in. I will contact Robin, thanks for the recommendation.

Babyspider, I know what you mean about analysing things. I said in my post that my DD has no problems with touch, but she does not like having her hair brushed, which can be a trait. The paed that DD sees had asked about sensory issues and specifically asked how she was about her hair and noted it in a report as a possible sensory issue. Hence, I became worried about it. I posted on here about her having her first hair-cut and got some great advice (of course!) But it turned out to be fine, and she was much happier about having her hair brushed when it had a good cut and was more manageable.
So yes, definitely her issues with her hair are just typical ones in that she simply didn't like having it brushed when it got too long and prone to tats. That said, I think there is more to her restrictive food choices than just being picky...
I am going to have a look at the supplements, that sounds interesting.

hello. I've just posted a new topic as I'm new to this too....you sound exactly the same as me. the things you just described are identical to my son. he has good eye contact, is happy and smiley, isffairly sociable, he doesn't appear to have issues with routine either. the main concerns are his speech is very delayed, he does the wheels thing all day, he sometimes looks out the corner of his eyes and goes round in a circle, he thinks that is particularly hilarious. he has shaken his head vigorously when really excited but hasn't done this frequently nor in the last year (ish). my son is 3 in march. we have just started speech therapy and will be referred after this to the development team. I'm so worried and confused...some traits are textbook and some definitely aren't. did your hv Irene gp tell you they think it's autism? ??? xxx

I just read your reply re food and honestlyyou and your d sound exactly like me and my son. I'm sat here crying partly because I'm relieved I'm not alone but also because I feel like I'm admitting he has mild autism (if that even exists? ). I'd really appreciate if you could read my post on the separate thread and let me know what you think xxx

I've put a post on your other thread. I hope that you are ok, I understand how worried and alone you feel. I can promise that even if it ultimately turns out that your DS has some difficulties, he is still your lovely DS, and it will not be the end of the world. He will surprise you and continue to make progress.
My DD has her difficulties, but we have a great life and we are really happy. Your DS sounds brilliant, he is lucky to have such a caring mum.

thank you I really appreciate that. xxx

My DS has only recently at the age of 5 started to have problems with his sleep. He's always been a great sleeper up until now and slept all through the night from a couple of months old.

He's not bothered about touch from us, although acts like he's very ticklish if you touch him. He's not a big fan of other people touching him if he's not in the mood.

Since being on a gluten free diet his speech has improved dramatically.

Someone on here recommended Alan Greenspan, so I bought his book Engaging Autism. While I don't have the resources to implement the kind of treatment plan he talks about, we've been doing some of the activities and things he suggests, and DD is loving it.

How did you rate More Than Words? We've been considering it, DD has been doing PECS, and it's great for getting her to request things, but not so much about conversation...

MummytoMog, I found the More than Words really good. It helped me to find ways to help DD to communicate. It's based on the parent doing the work and all centred around everyday activities. I would recommend it. My DD has made good progress with her communication, but that said, she isn't really conversational at all.
I have an appointment to see a SALT who specialises in ASD next week, and this was one of things I plan to ask her about, to see if there is anything I can do to help her towards this. I will post if I learn anything.

excuse my ignorance but how does a gluten free diet interact with autism / learning difficulties? thanks xxx

laurajdickson - hiya! You sound so like we did back in July! I promise it has got easier. We initially asked the HV for advice as I thought that his speech wasn't really progressing from single words to sentences (though he had a huge vocabulary). She said he was still within "normal ranges" blah blah, so we gave it another month then went back again. We were referred for hearing checks (came back fine) then spoke to SALT and were referred for a triage appointment. It was while waiting for triage we went to a private Salt, more because I felt that I couldn't keep having the same conversations with DH every evening while we waited for the appointment! She did the MChat, which he failed so we went back to HV and asked for referral to the development team. That was when I cried! I really hadn't seen it coming however we're much more positive now. I realised that he hasn't changed and he's still the same perfect boy as before the mchat.

But you're right, it's so hard when some traits are textbook but the rest of the time I think he just seems like any other 2 year old, he just doesn't talk much.

He's come on so much since then (July) and I really can't recommend More than Words enough! Before we started, DS would label things but didn't ever ask for anything. He now asks for things, points out stuff that interests him, it's improved his joint attention... And it isn't all stuff we've been specifically been focusing on. It's as if we've rebooted him slightly. He isn't conversational yet but I don't think we're that far away from it.

On diet, I've now cut out the crap (not that there was much) and I'm being more careful to ensure he eats regularly. I've also started him on omega supplements and vitamins. He's been great with it too. Seems much more stable in his moods. I don't know about gluten free but maybe someone else can enlighten us both on that!

That was a bit of a brain dump so sorry but I hope it helped. I will go and find the thread you started.

Wikipedia explains it quite well and in simpler terms that are easier to understand than scouring through medical journals laura, there's quite a few studies on it too (I've added a couple of links to studies and the last is based on surveys of parents of ASD children), some agreeing and some not. I read about it here on mn and once my son had been GF for about 6 months he'd stopped having as much meltdowns, stopped ripping the skin from his hands and face, his eye contact improved and so did many other things. It might be a coincident but we're not prepared to take him off the GF diet at the moment.

en.m.wikipedia.org/wiki/Gluten-free,_casein-free_diet#section_2

people.emich.edu/jtodd/whiteley_et_al_1999.pdf

onlinelibrary.wiley.com/doi/10.1002/14651858.CD003498.pub3/full

www.futurity.org/health-medicine/gluten-free-diet-eases-autism-say-parents/