Hi all! I thought I should introduce myself and my DS.

[staryeyed]

My son who is just 2, was seen by the developmental paediatrician who confirmed what we suspected- that DS is autistic. We don't know too much yet- what level it is etc. He wont be diagnosed until later.

He is lovely and gorgeous I'm so lucky to have him. He's cheerful and funny and very energetic. I wrote my first thread on the development board.www.mumsnet.com/Talk?topicid=8&threadid=318615&stamp=070526180001

Since he has been on fish oils, just for 4 weeks now, he has improved more than in the last 3 months. I cant say it is down to the fish oils it may be he's having a sudden spurt, but I will carry on using them. He still has days when he is almost completely unresponsive but the overall picture is good.

His language however, appears to be getting worse. He babbles a lot and appears to be saying things but its completely unrecognisable except dadda and bubba and maybe some others which aren't used in context.

Waiting on the NHS SALT to come through. How much can SALTs do with a child that doesn't seem to want to talk? I'm looking at different things to try right now. ABA, homeopathy, PECS, Hanen etc anyone had any success with any of these?

Message withdrawn

I just wanted to say "hello" and welcome to Mumsnet. I used ideas from the Hanen programme with my son (deaf rather than autism, but good general language & communication ideas in Hanen).

Thank you all for your welcome.

Electra-He does understand instructions but mostly with a visual cue. Is that what receptive language means? Do you run the ABA programme yourself or with professionals?

I don't really understand how PECS works. The paediatrician said something about starting with photographs because he wouldn't have the ability to generalise from pictures. Is it worth going on a training course? Feeling a bit confused about what I should be doing with him. Way back I tried signing with him and he managed to learn a few. Now forgotten. SALT said I should try to get him to talk, but he gets really frustrated with me when I do that. Said I should battle through the frustration. Now feel unsure.

Anyone tried homoeopathy/alternative therapies? I'm a sceptic but searching internet shows some interesting stories.

Hi and welcome to MN. I have a 3 year old who I suspect is mildly autistic (waiting till Jan for NHS appointments), and definitely has very delayed speech, both expressive and receptive (i.e understanding).

I have also found a Hanen book very useful "It takes two to talk", there is also a Hanen book specifically written for helping autistic children to talk "More than Words". They contain lots and lots of practical tips, both for encouraging your child to communicate, as well as for the actual language.

You can see more info about their approach on the website www.hanen.org (Hanen is an organisation specialising in helping children with speech delay/communication problems). The books are about £30 each either on ebay or through Hanen, but you might be able to get SALT to lend you a copy.

I've only had a couple of private SALT appointments (can't afford any more, and they were to assess rather than treat) so can't really comment much on that side of things.

I have no experience of PECs at all, other MNetters have though, and you should find more info about PECs on the do2learn site (think it's www.do2learn.com). I have tried a little bit with signing with DS, seems to be working a bit (I have just used the sing and sign DVD), and watch Something Special on the CBeebies. There's also quite a nice little basic book with Signs in by Annie Kubler that's £4.99.

I've not tried homeopathy or any alternative remedies. Personally I don't see any harm in trying homeopathy in conjunction with other approaches (well unless it's using up money that you can't really afford iyswim).

Signing will only work with a child with imitation skills though. We've tried to introduce signing to ds1 repeatedly from the age of 2- he finally got it aged almost 8 after he finally learned to imitate. PECS he understood rapidly and has used from before tha ge of 3. . He now has 4 signs (that aren't accurate but we understand) but 100s of PECS symbols he can use.

We use a mix of ABA and VB. I'm not convinced about VB for a child with little chance of speech- I think to progress with VB you seem to need speech. Although we do broadly use ABLLS but have to adapt the speech part.

Hi and welcome! I have a 4.5 year old son wth ASD - I recognise many of the things that you describe from when he was 2. He wasn't dx until he was 3.3 though, and I think it's great that you've got such an early start with your DS. I also remember being overwhelmed by all the different approaches on offer - and feeling this tremendous sense of responsibility and pressure to choose the 'right' one. I thought I might write about what we've done so far - but apologies if it's long winded!

We started by concentrating on Floortime, which I learnt about by reading Stanley Greenspan's book, 'The Special Needs Child'. This helped his social interaction no end - he is now a very responsive child within the family, though less so 'out and about'. If you google floortime you'll find a website too (this may have already been mentioned).

I did tons and tons of singing and reading, not pressuring him to talk at all, but just leaving gaps here and there - and after a while he started to fill them in. It sounds as if your son responds to music, so this might be worth trying. A lot of the songs I did had signs attached (from Sing and Sign, Something Special and the Dave Benson-Philips Makaton nursery rhymes video). Although he's never signed much himself, it did improve his receptive language a great deal - having something to look at as well as listen to seemed to reinforce the word somehow. At this stage (2 -3.5) he was saying a few single words but they would come into his vocabulary and then just drop out again, so that he never had a 'working vocab' of more than 5 words at a time.

When he was 3.5 we introduced PECS (their course is really worth going on; would highly recommend it) and this is when he began to use functional language - again, only single words and limited to the things he really really wanted! At first his speech was always prompted (he'd give us the PEC card and we would say 'I want ......' and see if he'd fill it in. From about 4 he started using words to request things spontaneously and he now has a slowly growing vocabulary which he seems to be retaining - still only single words (with a few learnt phrases like 'timegohome?' ) and still only for stuff he really really wants - but it's a hell of a step forward from 'dickerdicker dicker', which is all he used to say at 2.

At this stage though he was still refusing to do any adult initiated activity (except singing and looking at books). Any attempt to teach him anything directly was completely rejected.

Since he was 4 we've been doing a home programme which is run by Growing Minds (review on Gess's website) and is based on ABA/VB. We've also started a biomed regime, supervised by Mike Ash of Nutrilink (again you can google; sorry, crap at links). These last 6 months have seen the biggest advances so far in that he can now sit at a table for up to 15 minutes, follow receptive instructions and is learning skills like imitation, matching, playing with toys appropriately and labeling objects and pictures. He has become far more responsive and affectionate, often seeking us out rather than being happy on his own. Although he's still very obviously autistic I feel very positive about his progress (although I still have black days from time to time).

Hope some of this LONG post is helpful. You'll get tons of support and advice on here - it saved my life when we were in the early stages of dx and I still regard the mums on here as my major source of info!

Hi

Just to say its very similar to my dd. She is almost 2 years old and has no words, doesnt point or wave, inconsistant eye contact, cannot show me what she wants, doesnt play with children, doesnt follow simple directions,tunes us out, doesnt pretend play. She also stares at the coving somtimes and eats with her eyes shut somtimes, grimicing.

We have just begun the referal process, our HV referred her on the 9th of this month. We saw a SaLT at a drop-in clinic (15min) she said from her point of view it seems my daughter is showing signs of ASD and referred her also.

Seems like we are both at the same stages with our children, it will be nice to know how you get on with things, take care xx

Wow thanks for al your support. It is nice to know I'm not alone.

Strawberryswirl- its comforting to know there are others at the same stage of the process. Be good to compare notes.

I'm starting to believe that fish oils are responsible for the progress he has made so far. Before fish oils he was so not interested in any sort of learning I tried to do with him or playing. He would just walk away/switch off. Since fish oils I put him in front of Baby Einsteins which he really seems to enjoy and he sits to watch the whole thing. He also has taken an interest in things like numbers and shapes-he always could do shape sorting but recently he has started to point to the shapes in his magnetic doodle thing and waits for me to name them.

We also has this number chart that I put in front of him and he counted it by pointing to each one in turn (without saying the numbers). Then I was curious so I put sweets in front of it and counted 1 sweet on number one 2 on number 2 etc. I then took the sweets off the chart and he put them back on in order. I was so close to tears. So I put his number cards out in font of the chart (in order) and matched the numbers up and then said you do and he did! I then mixed up the number to see if he actually recognised the numbers and he rearranged the number in the right order. that was numbers 1 to 5 when I introduced 6 -10 it went out the window-got a bit ahead of myself.

I just cant believe it. He has even watched other children and even interacted with one boy just for a second but its better than when other children just weren't there for him. I am keeping a diary of what he is doing and it just amazes me what progress she has made in a month. I am being quite intensive with him at home but I'm just making up it up as I go along. He gave such good eye contact to his aunty and uncle.

His language is not improving though. He just babbles and says incomprehensible things. He also wont point to anything if asked. So although the fish oils seem to be helping his concentration and memory, his language has remained the same. He has this rash on his bum that will not clear despite trying everything, and he also has a sticky eye that keeps returning. I'm sure there is a health factor involved. His poos are also not quite right. The paed was saying that biomed is mumbo jumbo. I'm not sure.

Hi staryeye

Im really glad you are seeing some progress in your son. You must feel very happy when it clicked into place for him

Ive been using the fish oils with dd since she was 18 months old. Unfortunatly i dont she any difference in her although i will keep using them.

dd is really interested in books, her favorite pages are the ones with real pitures of food. Instead of her pointing she takes my hand and uses my finger to point at the pictures.

She doesnt do anything i ask her to do, although she use to put her head down towards me when i asked her for a kiss...she doesnt do it anymore...perhapes its regression.

Her eye contact is inconsistant...one day she will look at her grandparents and the next its as if they havent even entered the room. And sadly for her older brothers she has never given them eye contact, i dont know why.

It will be nice if you keep me updated on how your ds is going and also how you are getting along with nhs and the treatment he has.

Once again im pleased your ds is making some progress. Take care xx

Strawberryswirl- What sort do you use? It may be it was his time to develop but the changes from last month to this month do seem to suggest they are doing something. Do you use anything else with your Dd; diet stuff/restriction other supplements etc?

The weird thing is he is different daily and different times of the day. Like on Saturday he was completely unresponsive it was so disheartening. I was trying everything to get him to engage and I got nothing back so in the end I gave up. He used to be like that most days. I have also started taking him to the park to let him run around be around other children and put him in a gym class. I think that may be helping him as well Although he spent most the time running around. Doesn't help this week that the weather is c**p!

staryeyed - we use Eye q Baby. I must agree sometimes she is non-responsive and sometimes she is. somtimes she will sit and i will read her a story and sometimes she just chucks the book haha.

We havent tried anything with her diet at the moment as she is a very fussy eater at the best of times. There is somthing called the sunderland test to test gluten etc ...but its very early days with us so that will come abit later on. At the moment i would just love to know what is 'going on' with her, but as i have seen it may take a long time for any diagnosis.

How does your son let you know what he wants? As i find it really frustraiting that my dd cant let me know what she wants and she gets upset too. What i would just love is for her to say something to me, anything!

Oh and the weather!! it had to be on half term my eldest is climbing up the walls haha

xx

He lets me know pretty much by instinctive parenting- i.e. I have to guess- its been a while since breakfast you must want a snack etc.

He does stand by the fruit bowl for a banana or the door for milk/water. everything else he gets for himself or beckons with his hands in the general direction.

I was looking at those tests too but they are so expensive and some say there is no science behind it. I'm in split minds.

when did you realise something wasn't right? For me now knowing, I can look back and think things were a bit strange early on- he didn't like being held for a while when he was young. At the time I thought that was his personality. More recently he started behaving really silly. We thought it was cute. I didn't really think anything until I read a ladies post on another website about symptoms in her son. Then something told me deep down that all wasn't right with him.

haha yes i have to be instintive too, one example is at around 11 oclock she starts moaning and it for some milk.

Well at its wierd when i think back to when she was about 13 months old...she would walk with her eyes shut, at the time we thought it was amuzing. Around the same time when my husband would pick her up she would flop back. Gradually over the months between then and now there was just something that we couldnt but we couldnt put our finger on it. We have a ds who is only 18 months older than eloise and we were noticing that they werent just different as brother and sister could be but they were completely different in soical and language development! ds was talking at 16 months old, he excelled in his developement and another thing eloise doesnt look at me like ds son does ...its hard to explain.
x

can i just add it wasnt till she was about 20 months old that my husband found sypmtoms for ASD on the web...he sent them to me(from computer upstairs) and i read them and i just couldnt believe what i was reading ...the symptoms decribed my daughter!

Ds is my first so I had no idea that something was wrong things just didn't seem right. It was more highlighted as we were around other children at toddler group.

I am finding this intensive thing exhausting I don't feel like I have time or energy for anything else. He's having another unresponsive day today. Sometimes I can put a puzzle in front of him and he will do it with ease, sometimes he insists on putting the pieces in places they clearly don't fit. I think it's his diet that makes him like this; I cut down wheat initially but then I decided that wouldn't be very scientific because I wouldn't be able to work out whether the fish oils or the gluten free was responsible for the change IYSWIM So I re-included it and I think that may explain his off days. My family has a history of wheat intolerance anyway. So I think that's my next thing. Still thing it may be a yeast thing but the yeast free diet involves cutting out carbs and my son loves potatoes. I'm still so confused about all the different treatments I take it you have to get your GPs support to go down some of the biomed routes? Things things like prescribing anti yeast medication and keeping an eye on there progress etc in case of any side effects.

Strawberry swirl- I read something about autistic kids being unable to absorb fish oils and may need extra supplements to help the absorption.

Gess- How did you introduce PECS did you use photographs first? I don't think my son could understand the picutres.

Hi Staryeyed - just wanted to comment on your "intensive" comment. I think you are being rather tough on both yourself and your DS. I'm saying that as someone whose done very similar to you. My DS is deaf and he was my first child too so I didn't know just how much of his development was being normal and how much due to deafness. I was doing the puzzles etc very early on, spending every single moment either reading up on what next to play (long past midnight, on the train to work etc) or playing with him and trying to incorporate it into our daily lives. I am about 90% certain that some of that hard work has paid off but part of me thinks he might have come along just as well without it all, maybe a tiny bit later only. However, it gave me a purpose at the time and a feeling that I could do something for him when I couldn't control other things. But I wanted to point this out to you, that you can give yourself some time off now and again. Good luck with it all, you sound like you'll help your DS as much as you can.

Staryeyed i know what you say when you dont have any time for anything else. This has been on my mind for the last 3 weeks. It had been starting to do my head in. But ive got to think of the rest of my family, my 3 year old and my 9 year old espcially because they dont really know what going on. We are not going to tell ds3, whos 9, until we know for sure what is happening with eloise.

Have you mananaged to see anyone yet? i mean has your HV referred you anywhere yet? have you seen a SaLT.

Remember to give yourself some breathing space, this is a big thing, i know, but it is also going to be a long journey and you dont want to wear yourself out at the begining.

Take care hun xx

Staryeyed - it sounds weird, but when you first start PECS with your child, it doesn't matter what's on the picture. The very first stage is learning to exchange one picture for one item, say 'biscuit'. One person sits with the child and the other sits opposite with the biscuit. When the child reaches for the biscuit, the person sitting with him prompts him (hand over hand) to pick up the picture and hand it to the person opposite, who then gives him the biscuit. You do this over and over again until the child is doing the exchange himself.

It's not until later that he/she is taught to discriminate between two pictures and that's when the picture recognition starts to come in.

It sounds very complicated but a good speech therapist trained in PECS will be able to teach you. The course run by the PECS people is great too, but very expensive. They run courses around the country. If you google 'Pyramid' you should get details.

Hi Staryeyed, welcome to Mumsnet. Sn's is a fab and massively supportive part of mumsnet and I think everyone who uses it has found it a lifeline sometimes. There are some amazing women who use this site who have picked me up when I was down and shared my j=highs as well. Welcome - enjoy

Thanks Sphil that makes sense.

I know that I am making it hard on myself. I'm trying to keep it fun for my son and if he gets bored with anything I don't make him do it.

I don't know how long it will be until the NHS stuff kicks in and whether it will be at all adequate.

Anyone had the gluten/cassein tests or the been treated for yeast build up? I am trying to keep ds treatment as scientific as possible to work out what actually works? Of course there will always be things that cross over like SALT and ABA and the fish oils. I've done one month of fish oils with some improvements apparently the full effect is at 3 months. Now I'm wondering whether to try GF for a month or add some more supplements or even be treating what we suspect may be a yeast problem It's all so confusing.

An update of progress.

My son is currently doing CF diet. He is starting to use his words again which is amazing but still doesn't say Mummy Eye contact is bad again even though it had improved with the fish oils.

Just spoke to a lovely lady who says my son may be entitled to attend a day nursery (that has sensory rooms etc.) in my area with a referral from the doctor. There will probably be a waiting list. There is for everything. Will also have a telephone interview with BIBIC to see if they can help him in anyway.

I am feeling positive at the moment- now that I know what we are doing. I felt a bit lost before. Got some very good books from the library that have helped me understand ABA and what sort of games I can try to encourage play.

Hi Stary.

I'm a salt,huge fan of PECS,doing a Masters in ABA and work mostly with children with sever receptive and expressive disorders.

Electra must have had some bad experiences because there is loads that can be done with children who are non verbal and/or have severe receptive diroders. This is what I have spent the last 12 years focussing on!

Good for you for thinking of stuff like ABA and PECS although from what you say,it doesn't sound so unusual.Many 2 year olds aren't speaking much including my own 2 year old ds.Obviously however only a proper salt assessment will tell you if there is cause for concern.

You've seen a salt already yes? Is the 'try to get him to talk' really what they told you??
If only it were that simple!

If you find that he needs additional specialised help I would really really recommend PECS. It is a superb system and as the others say,kids can start without 'understanding' what a picture needs (known as picture discrimination) Costs from about £150-200 but worth every damn penny.I will do you a link.