2yr old DS possibly autistic - help!

[lottytheladybird]

Just been recommended to join the special needs board!

My DS is 2yr & 2m old and we're seriously concerned that he is autistic. He doesn't wave or point, has poor eye contact, doesn't give things to us when requested, takes our hand to help him with things, doesn't do pretend play and isn't talking yet. We took him to see our GP on Tues, who's referred him to a paediatrician. We don't know how long it'll take for the appointment with the paediatrician to come through.

In the meantime, we really want to help our son. We are so worried. What help can we get privately? Any advice would be welcome. Thank you!

Hello lotty. You've come to the right place. It's a really tough time when you are seeking answers and a DX but really wanting to hear that everything is fine. You do seem to have some red flags there. My best recommendation is More Than Words which is a great book to help you start to get some understanding of how to help your DC to communicate, and to want to communicate. It is aimed at DC with Autism Spectrum Disorder, but if your DS turned out not to have ASD, the methods wouldn't harm him and would still be beneficial.

Others will be along to give you more advice and a welcome, I'm sure.

Ellen Jane - Thank you for post. We've just bought the book actually, so hopefully it'll help our DS.

Couple of books which have been useful are More than words and
Motivation & reinforcement

The best thing you can do for your ds is early intervention and he is very young so you have a very good chance to improve his communication. I would strongly recommend that you look into ABA (Applied behavioral analysis). we were in your position last year and have been doing ABA since January this year. Even though things are not perfect, they are getting better and we are hoping to see some more improvements soon. If you have any questions, feel free to ask.

Get a confirmation of the dx privately- you do have red flags but it can turn out to be smth else entirely. If it is indeed autism, look into ABA and Tinsley house (there s a thread on it here), start supplements and start speech therapy.

Definitely try ABA - getting in this early is fantastic as the brain is still 'elastic' and very capable of change. I started ABA at 3.5 (and it had great results) but will always regret not starting at 2. Try Sean Rhodes or Duncan Fennemore, or there is a new ABA assessment clinic I heard about in Southampton, run by another top consultant called Francesca degli Espinosa. Don't wait on NHS - it is slower than a snail.

agree completely with the other posters. My experience is of Hanen rather than ABA. The NHS is v slow, and what they can offer tends to be rather limited. So unfortunately be prepared to go private and/or put in a lot of work yourself.

Otherwise I would add - get hearing and sight checked to rule out a physical problem, NHS should be able to get that sorted within a couple of months. and look at a speech therapist assessment as well, to check out his understanding of language.

Hi and Welcome to the board.

In some areas you can self refer to Speech and Language, go to your local Children's centre and flag up your sons issues with the family support worker. The ones I have met through my work have been extremely good at getting support for families and pointing them in the right direction. Some Children's centres have drop in Speech Therapists and ours runs an early language support group.

While you are waiting for your appointment, if you cant go private[many people cant,] Try getting on a MAKATON signing course and start using some signs and visuals to kick start his communication.

Keep coming on here for advice and support and good luck

I would second those who say do not wait for the NHS (or anyone else). You won't find any help offered from them anyway. Research ABA (on this board and on the net generally) and then start as much of an ABA programme as you can afford, as soon as you can. PM me if you would like to chat further

good advice re:Makaton but can he imitate/copy you?

My DS2 wouldn't take to signing, too abstract maybe? PECs (Picture Exchange Communication) kickstarted his communication, may be worth investigating? In the meantime, use photos of family members, favourite destinations, etc like the park, to help him understand what's coming up next, to ease frustration.

Try to give choices to give him some control, eg offer glass of apple juice or milk, (or whatever works, crisp or biscuit) letting him choose, while giving him the words. 'Apple juice or milk' and when he chooses, repeat the choice, 'Milk, I want milk,' using the words he would use, as pronoun (you/me) confusion is common. In this case, the reward/motivator for choosing is the drink itself. In time this can move on to a choice board of pictures of food, drinks, games etc, then on to symbols/cartoons on cards of the choices. He has to take a card, give it to you while you say, 'Milk, I want milk.' This is the picture exchange part, teaching him that his has to actively communicate with you to get his choice/reward. In time he should start using the words and the cards can be stopped.

If you start with the items themselves (with you saying the word), that is the most concrete, then photos if the items, then symbols (with the word written under them,) on to words alone.

HTH

Thank you so much for all of your posts! There seems to be so much we need to learn about. We're definitely going to look into ABA & PEC. We've now bought the More than Words book. Great to find out that some Children's Centre's offer speech therapy - I'll definitely be contacting mine on Monday!

We are seriously thinking about going down the private route - what's the best way of finding the best paediatrician in my area (Dorset)?

Hi
Just felt like I had to post. My DS (now aged 4.11) sounds very similar to how your son was at 2. He didn't hardly talk, he had lost words that he could say earlier, he would not point or wave, if he wanted something he could take my hand and put it on what he wanted, he was always on the go, not great eye contact etc.
We got an amazing lady involved who said that he had sensory processing disorder and we started a sensory diet. He changed over night. He started talking and became calmer.
SLT and Ed Psych been involved. He has now just started school and has a statement for 22 hours per week. So fas so good - he is doing really well.
When he was two i think he would have been diagnosed with asd easily as he ticked all the boxes. However, with lots of work from us and input from others he has come on so much that we have decided not to get him diagnosed. He has his statement, his coming in so our view is that we do not want him labelling. So many times people have generalised saying things such as "autictis children do that don't they".
This was our decision and I'm not saying its right for everyone - all I would say is consider all options. A few years ago all I wanted was a name for why he was like the way he was - now I have accepted that it doesn't matter for him or us what it is - he is still the same lovely little boy who has come on so much with the right help.
Hope that helps.
Sally x

welcome, I practically lived here for a few years, you've come to the right place.

More than Words is a terrific place to start. It gives you foundational techniques that you can use for the rest of Ds's childhood. It's also very family friendly - it doesn't make you feel you've suddenly turned your home into a therapy centre -gives you a great chance to keep the extended family on board and increase their confidence in communicating with DS, etc! It sounds as though you and DH are on the same page and More than Words will help cement that teamwork.

I'd give yourself a couple of months to absorb these principles rather than research everything at once. the More than Words techniques are not exclusive at all and you can start to go deeper once they are second nature to you. You then know you have the options of ABA, pecs, special diets, alternative diagnoses and all those things, and hopefully by that point you will have a therapist in place to guide you. What all the techniques have in common is that they involve giving your child lots of individual attention, so have a think about what else you can prune out of your life.

If you have money, I would agree with the others who have said to look into ABA.

Oh how I wish we had started when DS was 2. Imo you lose nothing but might gain enormously.

you've had some great advice here, my ds was very similar to yours at 2, only 2 words (same word 2 meanings iykwim) he was late to wave, point but eye contact was ok-ish. only thing i would say is buy a note book and keep a diary of milestones with the ages alongside...things you feel he isn't doing that he shouldn't be write it down my biggest regret was not doing this as i have forgotten so much and the paeds will spend quite a while asking about them all.

will add my ds as made so much improvement from 2yrs old to now, he is 3.9 now and from no speech at 2 he is now almost caught up at 3.9 and his vocab is above average. he is also on a dairy free diet and it made a masive difference to him. goodluck x

Sally200 - Thank you for your post. Please can I ask if your DS now points & waves? If so, did you teach him, or did he suddenly start doing it spontaneously?

Dudes Mummy & Schobe - You both suggested ABA and mentioned cost. I haven't had time to look into ABA much yet. How can we get ABA? Who provides it? What sort of money are we talking about?

sickofsocalledexperts - Please could you let me know the name of the clinic that you mentioned was on Southampton? Also, where are Sean Rhodes or Duncan Fennemore based? Thanks.

Lotty - yes he does not point and wave. I think it was a combination of us teaching him and him developing himself. If you want to have a chat pm me and I'll give you my number. The best advice I can give is to be hopeful x

Sally200 - I would love to have a chat and would be grateful for your number. Thank you!

Hi Lotty,
Glad you found us over here :)
I can't remember what I said on your other post about my DSs and too brain dead to look.
Your DS sounds like my DS2 (now 5) at that age - no pointing, no words, no pretend play etc. But I am lucky that DS2 has come on leaps and bounds. He is now 5 and has fairly good (although very literal) language. He doesn't wave by intuition, but might do when prompted. I had a little moment the other weekend when after we had visitors to stay and they were getting in the car to go home, DS1 (10, Aspergers), was reminding DS2 of all the social rules - "no you have to go outside to say good bye", "now we say good bye and give ... a hug", "now we wave", "no don't run inside yet you have to wave".

LittleMissGreen - Did you get any intervention for DS2 to help him? I am spending every spare second I have looking into intervention for my DS. I am so worried about him.

The only way you will get ABA at this stage is if you pay privately. It is not cheap unfortunately. The cost is very variable, depending on how many hours you choose to go for, how many tutors you employ and also who you choose as your ABA provider.

I think Duncan Fennemore is London based. Sean Rhodes is based in Bristol (ABC Clinic) and there is also PEACH. Most if not all will travel so locatin is not very important. There is also Autism Partnership in London.

If you need info re starting up ABA and wanted to chat, I am happy to share my tuppence worth. Just send me a PM.

With DS1 I didn't realise there was anything different about him (other than thinking he was bright and quirky) until he started school. At which point, to put it mildly, all hell broke loose. I spent a lot of time reading up about aspergers and putting stuff into practice.
DS2 was born just after DS1 started school. By the time he was 1 and there were lots of symptoms of autism I put into practice what I had learnt for DS1. I obviously had to do it differently as DS1 was younger, non-verbal etc. I haven't ever paid for any treatment, but have put a lot of time and effort into teaching the boys social skills.
I now have a 4year old NT son, and it never ceases to amaze me how easy it is in comparison for him, in terms of learning social skills, imaginative play etc.

Should say, things do slowly seem to be moving in the NHS, certainly where we are. When DS1 was dx-ed it was a case of "we give a dx but there is no help after that" whereas now they will put children on an Early Bird programme.