Best early intervention for a young child showing very clear signs of asd.

[lovingthecoast]

Hi, I've been posting on and off about ds2 since he was about 6mth-he's now almost 10mths. He is my 4th so I noticed straight away things weren't right. Everyone has been so helpful on the other threads so I'm hoping to pick your brains once more.
Ok, just to summarise; couldn't BF, way too passive, never makes any noise at all, doesn't reach out, terrible eye contact, doesn't smile AT us but has this strange smile on his face most of the time, freaked out by noise but seems to have super sonic hearing. Recently he has started just about picking things up and letting them go immediately as if they are hot, then doing the same thing again and again. Also can spend an hour just staring at his own hands as he turns and twists them around.

So, thinking we may as well do what we can now but can't find much info relating to a 10mth old. Have found a few things through google and would appreciate any info on any of it inc the names I have found. Please feel free to CAT me if you'd rather not discuss in public as I'm desperate to make the right decisions at this stage.

Ok, googling has come up with
-a woman called Ruth Glynn Owen who has a website called early start or something. She works with children from 12mths. Only problem is she is based in Scotland and we are on the south coast! Any info appreciated though!
-a company called autism partnership who are in London and Leeds and will do Aba with children as young as 16mths with or without a diagnosis.
-a man called Duncan fennemore similar to above but with lots of good reviews on Internet and long waiting list.
-a clinic in London called infant mental health clinic where they treat children as you g as 6mths. Run by an Israeli woman called Dr Stella aqu.. (sorry can't remember exactly but think she is well published)

Any views on the above or any other suggestions of what to do would be most welcome. Just feel so helpless and desperate to do something. Thanks

[lovingthecoast]

Should also have added that DS never notices whether we come or go from a room and has never turned to watch us leave as my others did. Also hates being held. He tolerated it when little but now he's bigger he just pushes away. Also never answers to his name and doesnt understand mummy and daddy. Had both hearing and vision checked and both fine. Thanks

And sorry if it's not the fine thing to mention people and therapies by name. Hope I haven't upset anyone! Just new to this.

[lovingthecoast]

Sorry that should be done thing not fine.

[lovingthecoast]

Thanks Hothead. I've never heard of RDI or handle but off to google. Just impatient thinking he'll be 1yr in oct and we need to do our best whilst he's little.
Getting someone in to help a bit would be useful. By the end of the wk I'll have all 4 home in the day and DH will be in the US for 2wks. I'm stressed just thinking about it!

[lovingthecoast]

Yes, I came across that book when searching on here. It's Aba isn't it? Aba seems to be the only therapy I've heard of although the woman in Scotland does something different but can't remember what. I feel like I cannot retain anything at the moment.

[bialystockandbloom]

We use one of the consultants you have mentioned - and have a small amount of experience of the other one. Both are great

Both are Verbal Behaviour practitioners (rather than than traditional ABA though it doesn't really make much difference). the only big difference in VB tended to be that it treated language as a behaviour/skill to be learnt which traditionally ABA (Lovaas) didn't.

Ruth G-O will travel outside Scotland. Duncan is in south of England and will also travel. You generally see the consultant every few months so it doesn't really matter if they're not close - it will be the supervisor and of course tutors who need to be nearby.

Don't worry too much about Duncan's waiitng list. He's usually booked a few months in advance but this will come round by the time you have set up a programme (found tutors etc).

In the first instance best to speak to them both. PM me if you want more info, I obv can't put too much personal detail here!

I agree that you can do much of the day-to-day tutoring yourself esp with such a young child, but I would say that you need some professional expertise to help with identifying where the problems are, setting up programmes to address them, to monitor progress, set new targets etc.

It would be worth looking at Mary Lynch Barbera's book on Verbal Behaviour (sorry can't do link now) as well as the Schramm one.

Well done by the way for being so positive and brave about tackling this. I had my head in the sand for far too long hoping that my ds was ok - wish I'd been braver and started intervention earlier.

[babiki]

I used Ruth, she is lovely and spends half her time in London. She will do a thorough assesment and detailed plan, not only ABA, she uses more approaches, individually tailored - definetely recommend her. Good luck!!

[lovingthecoast]

Thank you all!
bialy, you were very helpful on my other threads too. Thank you. Good to hear good things about both RG-O and DF. She will work with children younger than he will but he is much closer though if they will both travel and consult then I guess that would be fine. I will try to call both their clinics tomorrow.
bialy, I'm not being brave at all. I'm devastated if I'm honest. Feel like I have burdened my other 3 kids by being selfish and wanting a fourth. Like I should have been grateful for the 3 I had. But then I feel terrible for DS for even thinking like that. The only thing keeping me sane at the moment is the idea that we could do something now/soon and that by starting early we could maybe make a difference to his life chances. But I don't know if I'm being stupidly optimistic on this.
Hope nobody minds me lurking and posting on this section. I'm starting to feel like this is going to be a refuge for me.

[lovingthecoast]

babiki, I remember you said on my last thread that you knew of someone. I guess it was Ruth Glynne-Owen. Glad to hear good things. Does she consult and help you put a team together or is that something we need to do? How on earth do we go about finding tutors. Also, just had another look at her website and it says something about her bring the only person who does what she does. How then do I find someone else go help implement whatever plan she may come ip with?
Sorry for all the questions.

[babiki]

She knows some tutors, depending on the area, also does free follow up consultations over phone and email, it would be ideal if she can review every 3-4 months. Mind you, your little one being so small it will be helpful just for you both parents to implement some approaches, it's good you have started so early, you can all learn as you go together. I'm sure she will help you find the right people, but at this age it will be very parent focused. I'm thinking of going for ABA course done by the Peach charity in near future, but my ds is almost 3. Good luck and let us know how things go.

[babiki]

Lovingthecoast, I know how you feel, my youngest has got special needs, was worried with the first two but with the third one it didn't even occur to me that there might be problems... Oh well, life I suppose :)

[lovingthecoast]

Thanks babiki, I will call her in the morning as hopefully dd2 will be back at preschool after her bug.
It's the parent led thing that scares me as I don't feel like I have the first clue where to start. Also I feel so stressed by the whole thing that I'm not sure I'd be any good or have enough energy. I know that sounds awful but with 3 other kids and a DH who spends at least one week every month in the US then I'm nervous about it all. Plus we have no living parents or siblings so just me. So nervous about it all. Hope she's easy to talk to-scared I might blub!

[babiki]

Don't worry, she is very easy going. I understand, was also worried, but you will see it's not that difficult and you can get a tutor straight away to help out. With such a small child you interact with him all the time anyway, so it will be just a matter of different reactions and things like that- I'm not really good in explaining this, but don't worry. It will be also helpful to know if she thinks he is asd, I thought my ds is, but actually he isn't - still trying to follow the programme though, as he is very behind with speech and social skills.

[lovingthecoast]

Thanks again, babiki! It will be interesting to see what she thinks though she may say its difficult to call at 10mths. Did she have a good idea that your DS wasn't autistic then? That's interesting and reassuring in terms of her experience. Can I ask; does your DS present with lots of asd traits then? Sorry to be nosey and ask so many questions it's just that ds2's symptoms and behaviours are screaming autism to me and I havent really considered what else it could be. Either way he is def struggling.

[babiki]

She actually said in some cases it is quite obvious even e'around 6 months... But in UK this is not acceptable ( hence the non existent Nhs early inetervention). My ds is a bit of mixed bag, I did think it could be autism, but his eye contact was always good and joint attention plus imaginery play as well - altough the nhs Salt are not convinced, he behaves really badly at all Nhs appointments :) his is very delayed in all aspects, will be 3 in November and just started walking, he started suddenly vocalizing and has got about 20 words now, but he also doesn't like loud noises, eats only pureed food - sensory issues, doesn't like too many people... He is about 15 months developmentally... At the moment they call it global development delay, he will probably go on to have a learning disability.

[lovingthecoast]

Ohhhh, now I'm really interested to speak to her. Hope she's not lurking, feels rude to be constantly talking about her behind her back.

Your DS sounds different to mine as we have zero eye contact, no understanding of mummy or daddy and no interest in involving us in his world at all. He crawls everywhere though mainly to get away from us it would seem.

[mariamariam]

Get cracking with the interventions, at worst you'll have hothoused him unnecessarily. But also insist on being referred urgently to someone who really knows what they're doing re neurodevelopmental diagnosis.

I know youve been told his vision and hearing are fine, but its almost impossible to say that about such a young child. Visually impaired children can show lots of these things, as can hearing impaired ones and the difficulties can be complex and hard to spot.

you need a trip to an audiological expert who specialises in tinies and to one of the big paediatric ophthalmology departments.

[mariamariam]

and then a second trip to the developmental paed.

You'll get great advice about how to manage asd on here, most of it will help with other sen too. But there are other neurodevelopmentsl things that also need medical early interventions, special diets etc.

[lovingthecoast]

Thank you, Maria. We were sent to our local large hospital to have his vision checked. They said they were looking at how he tracked and how his pupils reacted to various stimuli. The hearing test seemed just like the newborn one.
I am going back to the GP later this week and will push for a referral to the developmental paed. It's just that from all I've read on here, my expectations of the NHS is pretty low hence my assumption that if we want to get him help ant time soon, we need to find it ourselves.

[babiki]

Lovingthecoast, just don't let them turn you down, insist. When DS was 1 year old, I knew there was something wrong but still let myself being lulled into calm by a GP stating vehemently that he is fine and blabbing on about Einstein...BTW the lack of eye contact etc. can be all worked on, that is why, in some other countries, they actually do proper early intervention...

[bialystockandbloom]

There really is no need to feel daunted about an ABA programme (if you start one of course!). The hardest part for me was finding tutors which felt stressful at the time but looking back I can't see what I was stressed about. (Was probably transferred emotion about ds's dx.)

For us, the day we had our first workshop and started our programme our lives were transformed. Finally we knew how to be the best parents for ds. Not just to make our lives easier (which of course did happen), and not just to 'manage' him (hate that concept), but to make sure that at every opportunity we were teaching him but in such a fun way, and a way that became just part of our parenting. He has never realised that any part of his programme has been a teaching process. It is just either us, the way we are with him, and his tutors who he just accepts come over and have fun with him - in the same way a child would have a nanny or childminder I guess.

All ABA boils down to is encouraging appropriate behaviour while eliminating (as far as possible) inappropriate behaviour, through how you respond to your child's behaviour. Everyone has a style of parenting - ABA is no harder than any other method, and becomes easier as you go on as your child progresses. Once he learns that it's more rewarding to do what you want, he'll keep on doing it so the whole process becomes more and more pleasurable for both of you - a virtuous circle.

Sorry for the essay, as you can tell I'm quite a fan of it

[AAmommy]

Ruth is just fantastic. She does not use one program fits all, she will try to find something that suits your child. Very devoted, very caring and very responsible. She is mainly in Scotland, but does travel to London area. I just love this girl!!! Hope she can help you out.

[lovingthecoast]

Thanks, AAmommy! She sounds great! I will try and tempt her to the beautiful south coast but if not, maybe we could opt for a mini break in Scotland or see her in London.