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

(32 Posts)
lovingthecoast Tue 10-Jul-12 10:46:53

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

OP’s posts: |
Bpr187 Fri 24-Apr-20 10:38:35

@harmos

I wasn’t looking for any signs of autism at all to be honest or even tracking his development because I had a very much (he’ll do it once he’s ready). What started all this was, he use to smile at 3-4 months and now he’s suddenly stopped. He literally never smiles it’s heartbreaking. Since I googled (biggest mistake although kinda glad in some ways) I then noticed a load of things he was doing which point towards it. I just so wish these signs didn’t emerge now when he’s so young just because I’m constantly worrying and even though I can get help for him earlier. I feel like I’ve only been able to truly enjoy for 6 months. I’ve been sick to my stomach since then just because I’m so worried. I love him so much I just want his future to be like every other child sad

Harmos Fri 24-Apr-20 10:04:02

Hi, We are also going through same situation our with son 3.3yr old much older than yours. Autism is that's what it is seems to have become so much more common now, whether its genetics or environmental factors (years of what we've been feeding ourselves). It worries me everyday that we could have a life as carers for a non-verbal non-independent son, but what can we do, nothing. We have ups and down moments, mostly down these days, but if this is our destiny then we have to accept it and move on. Yours is very young and I am unsure whether ASD traits can be relied upon at that age, so all I would say is enjoy these early years no matter what the future holds.

Bpr187 Tue 14-Apr-20 23:25:46

@lovingthecoast

Your son sounds exactly like my 6 month old. I have the exact same concerns now as you did and I am so worried about him sad .. I was just wondering how things worked out for you? And if you did ever get any intervention with Ruth? I have just contacted her regarding my son and hoping to get some intervention sorted soon when all this COVID is over.

I would really appreciate a response even though this thread is old. Xx

IndigoBell Sat 14-Jul-12 13:14:10

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lovingthecoast Sat 14-Jul-12 12:19:14

Thanks. Have arranged for two psychology students to come in over the summer and I'll contact both RG-O and DF in sept. he'll be 11mths then so closer to the age where both would consider taking him on. At least I feel like I'm doing something now as both these girls have an interest in Aba ans play based learning and therapy.

OP’s posts: |
AAmommy Wed 11-Jul-12 10:23:31

smile. Good luck! In terms of Scotland she is in a very nice area, and her charity is within the Universirsity campus, so you can even stay at campus. There are very good facilities there. We are frequent visitors to Ruth's place, so PM me if you need any additional info. And again, good luck!

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lovingthecoast Tue 10-Jul-12 23:09:21

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.

OP’s posts: |
AAmommy Tue 10-Jul-12 22:53:32

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.

bialystockandbloom Tue 10-Jul-12 22:25:36

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 grin

babiki Tue 10-Jul-12 21:24:24

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...

lovingthecoast Tue 10-Jul-12 21:17:36

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.

OP’s posts: |
mariamariam Tue 10-Jul-12 20:40:16

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.

mariamariam Tue 10-Jul-12 20:36:01

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.

lovingthecoast Tue 10-Jul-12 19:51:28

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. grin

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.

OP’s posts: |
babiki Tue 10-Jul-12 19:29:10

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 smile 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 Tue 10-Jul-12 18:02:36

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.

OP’s posts: |
babiki Tue 10-Jul-12 17:31:08

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 Tue 10-Jul-12 16:56:49

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!

OP’s posts: |
babiki Tue 10-Jul-12 16:50:53

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 smile

babiki Tue 10-Jul-12 16:47:04

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.

lovingthecoast Tue 10-Jul-12 15:21:47

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.

OP’s posts: |
lovingthecoast Tue 10-Jul-12 15:16:50

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.

OP’s posts: |
babiki Tue 10-Jul-12 14:41:32

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!!

bialystockandbloom Tue 10-Jul-12 13:57:38

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

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.

HotheadPaisan Tue 10-Jul-12 13:16:29

Message withdrawn at poster's request.

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