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2 yr old daughter recent asd diagnosis - need advice don't know what to do...

(24 Posts)
NikandE Mon 14-Jul-08 20:40:39

My daughter was assessed last week and diagnosed as high functioning asd. Although we had some concerns about her socialising we were really shocked at the diagnosis. She understands everything we say, her language is slightly delayed but pretty good, she is very affectionate and funny she is not aloof. The consultant said she did not demonstrate reciprocity in her play. The consultant said that we would receive 1 hour a week time with a play worker at home. We haven't received the full report from the consultant yet. I've been reading every book I can find and searching the internet all the time but I just feel I am so confused. It seems that the earlier you start treatment (not sure which treatment) the better the results. I want to do everything I can for my daughter but I feel 1 hour a week is not enough - similarly I don't know if something like ABA would be appropriate for her.
I just don't know where to start and feel very panicky which can't be good for us. I think I would feel a bit better about the whole situation if I could start taking positive steps. I live in SE London and would really appreciate any advice from parents who are better informed than me - thanks for taking the time to read this

jimjamshaslefttheyurt Mon 14-Jul-08 20:56:43

Remember it's a marathon not a race. Don't feel like you have to decide everything immediately- and the shock will fade. We lived in Bromley when we first started having concerns about ds1 (when he was 2), but didn't manage to get anywhere with services before we moved away so I can't give you much information.

I'm a bit short of time tonight but can I just refer you to my blog/autism product review site. It's much neglected at the moment but do have a look at the floortime repository- lots of videos to get started with. Also Growing Minds - they run ABA and son-rise type programmes. Some of the links might be useful to you.

misscutandstick Mon 14-Jul-08 22:56:00

You've just had a huge shock, a diagnosis like ASD is difficult to face even when parents are expecting it. To have it thrust upon you, i cant imagine how upside-down your world may feel. As Jimjams says, this is not a race... its a long-term thing, meaning that you have plenty of time to come to terms with what this diagnosis could mean to you as a family, there really isnt any hurry to do anything just yet. Give yourself time to bounce back from the shock, be gentle and forgiving with yourself, allow yourself to feel however you feel without adding any pressure - until you feel ready and strong enough to face this whole "new world" and all its people, terminology, 'programmes', and appointments. Your daughter will benefit from having her mum settled in herself and the situation before venturing into unknown territory.

I wish you much love and hugs, XXX

PS i remember some lovely people on here telling me to come to terms with the diagnosis first before rushing into anything. I thought "but ive 'lost' all this time, that i didnt know there was a problem". I found out that in waiting list times, a couple of weeks didnt really make any difference to the list. But it helped me to get over the shock. I have only recently come to understand the full implications of my sons possible PDD after realising the problem back in May. It DOES take longer than you think, hugs for your journey. XXX

sphil Mon 14-Jul-08 23:02:54

Linked to what Jimjams says, Stanley Greenspan's book 'The Special Needs Child' is excellent - he is very hot on reciprocity and suggests a structured programme to encourage it. (He's the Floortime chap).

I do remember that feeling of confusion and bewilderment post-dx - it's as if there's so much to read and think about that you can't get your head around it, but at the same time you know that no-one else will do it for you. I remember starting endless threads on here asking about ABA and RDI and dietary stuff - and all the time I was panicking because I just didn't KNOW what was best for him. But it did all slowly sort itself out and as I became more knowledgable I regained a sense of control.

Keep asking questions on here - it's been a lifeline for me. Almost every single intervention that has really helped DS2 I learnt about via MN!

Tclanger Tue 15-Jul-08 08:12:19

Message withdrawn at poster's request.

amber32002 Tue 15-Jul-08 08:25:11

NikandE, many wise words from others here already. Take it easy, get used to the info you already have. There's plenty of time.

Treatments can be great, but what really helps all the time is knowing how we think, how our way of seeing and experiencing the world is very different from others around us. Your daughter is likely to be able to hear things you can't, see things in a different way to you, experience smell, taste and texture in ways that are different from yours. It's difficult to explain why we fixate on things, how patterns and numbers and facts are far more interesting than people and their relationships with each other, but that's because our brains are genuinely differently wired up.

Most people are born with brains that are wired up to work out what other people think and feel. Ours aren't. They're wired in for numbers, facts, patterns, logic, social responsibility, loyalty. We have to learn every bit of human social behaviour from books and films and painstaking research over many years, and it will always be an exhausting foreign language to us, no matter how good we get at speaking it.

I can only speak from my own experience: What would have really, really helped me as a child was the knowledge that I personally didn't benefit at all from eye contact, nor from social events that my parents chose for me. Those were things that my parents benefited from making me do, so they could feel they had a 'normal' child. To me, the way I am is normal. This is how I am. The rest of the world is not-normal to those on the autistic spectrum. We understand each other just fine. We parallel-play because that's what works for us. It's not a broken or damaged or disabled way of playing, it's just different and it respects our needs. We need to learn not to be rude to other people, certainly, and to put up with a certain amount of social behaviour in order to make friends. But my friends are people who cope with me as I am, not people who want me to be something I'm not, if that makes sense?

We're great at individual things where we can practice it over and over again, and very often we'll go on to be better than anyone else at those specialised things. Not everyone will, but many of us do.

I needed to socialise on my own terms, in my own way, not be forced to be something I wasn't. I worry about a few (not all) of the training programs for ASDs because a few are so focused on getting the child to be something they're not, perhaps so that others can feel better about them and relate to them better. That can be a totally stressful and exhausting thing for the child. Yes, we have to learn to fit in somehow, because society certainly can't do all the adapting, but I'd say be wary of any program that doesn't allow space for your daughter to be who she is, or treats an ASD as some horrific thing and something to be entirely programmed out of the child. Look for what she's good at, and build on those strengths if you can. Be there for her when no-one else is. Value her for who she is. She has a great parent, and that's what counts.

bubblagirl Tue 15-Jul-08 08:41:00

hi nik where in se do you live? i live in se and go to a group called snap special needs and parents and through there they set up sourses at an affordable price

my ds 3 was dx with HFA about 8 weeks ago and it does put you through a scary time of not knopwing what to do or where to go next snap help with all of this thye do counsilling they have everything your chid need to learn

they have a libary with endless information on how to help with eevry thing toilet training obsessions or just learning about hfa

just remembetr at the moment you are doing all that needs to be done i bully myself everyday thinking i could be doing more but special needs practitioner assures me i am doing all i can do the rest will com e later at school and within pre school

contact snap if you are close by then could be worth you coming as they will give you all information you need if you have worries they are there to listen and you will meet others in your situation and gain help from them also

but to be honest its on here that i have had all of my support so never be worried to post anything even if you think its silly lots of us think or have thought something similar and its been great

and dont read up to much on internet hfa is different and doesnt always follow the the way it says on internet each child is different just find out your childs needs for now and work on them but remember also there still so young so some behaviour is perfectly normal for there age and not the dx its difficult to understand at the moment what is normal toddler behaviour an dwhat is dx

just treat her as you would of before dx dont see the dx in everything she does as she is still the adoreable little her who is trying to find herself and is still a toddler who could have terrible two's not strops from asd

have fun and try not to only see hfa

i couldnt do anything but with ds but he has made such huge progress that now i see what a bright determined little boy he is and have to accept he'll have struggles but im doing all i can and he is progressing every day so now i can feel happy as i know that in last 6 mths his a different little boy

bubblagirl Tue 15-Jul-08 08:41:53

sourses courses

bubblagirl Tue 15-Jul-08 08:43:42

sorry for spelling im rubbish when typing fast

drowninginlaundry Tue 15-Jul-08 08:45:31

I remember too well the first weeks post-diagnosis, I know how you feel.

What I have learned in these 2 2/1 years post diagnosis is that there is no such thing as a 'window of opportunity', after which intervention and therapy cannot make a difference. Yes, early intervention is beneficial, if it is the right kind - your child is an individual and what works for one does not work for your DD. She will develop and learn throughout her life, and you are not racing against the clock, and you haven't lost time. I guess what I am trying to say is be kind to yourself, give yourself time to adjust to a somewhat different world, your DD is loved and supported and that means a lot.

I live in SE London so depending on which borough you are, I might be able to help regarding services, nurseries, LEA, therapies, etc. I'd also be happy to tell you what has worked for us and what hasn't. We did run a full-time ABA programme for 6 months, and then reduced it to 7 hours per week (with no marked difference in his rate of progress), we are also doing Sensory Integration Therapy which I am praising to high heaven to anyone who will listen. if you want you can email me at laundryfairy at yahoo co uk

love xxx

nikos Tue 15-Jul-08 11:06:06

Amber - I wish you'd write a book. You are so good at explaining how it is to have ASD.

jimjamshaslefttheyurt Tue 15-Jul-08 13:25:21

"I worry about a few (not all) of the training programs for ASDs because a few are so focused on getting the child to be something they're not, perhaps so that others can feel better about them and relate to them better."

I think this depends hugely on where your child is on the spectrum. Donna Williams (with ASD herself) makes a distinction between high functioning aspies - who have always been in some control of their functioning and have had an understanding of self and lower functioning people on the spectrum who may be making no choices at all- they're living at the mercy of their compulsions and movement disorders/sensory processing problems which are way out. She makes a distinction between autism culture (e.g. aspie obsessions) and autism condition (where the child or adult is at the mercy of their autism and makes no choice). With intervention you may be able to help a child who is making no free choices to a position where they can.

If you have a child who can't imitate for example there is very little out there that will help. Your child can't relate to what is around them without imitation. BUt some children won't ever pick up imitation without being taught it. DS1 didn't until he was 7- this was after 2 years of teaching it. Once taught he has progressed.

I also know that he wants to speak. (He has made it quite clear on several occasions). I don't think he ever will speak, but I think it would be criminal to not give him the chance to communicate freely. We're doing that by teaching him typing. But he can only learn in certain ways and so those are the methods we're using.

I remember Donna Williams telling me not to feel guilted into doing nothing with my son. Giving him skills that will hopefully allow him to express himself in some way semi fluently (or as fluently as he is able) is not trying to rid him of his autism. I don;t care how autistic he is, but I would love him to be able to decide some of his own care as an adult. He's not going to magic those skills out of nowhere Likewise behaviour management is not a bad thing if it allows him to access things he otherwise couldn't access. We've a long way to go on that one- but he likes doing things and going out. He could do more and go out more if he could behave non-dangerously.

I agree that sensory integration is really helpful. Can be hard to access in the UK.

jimjamshaslefttheyurt Tue 15-Jul-08 13:27:46

here's something on culture v condition by Donna Williams.

jimjamshaslefttheyurt Tue 15-Jul-08 13:36:19

That's probably not that useful now, but as you look around bear in mind you know your dd best. If something feel right for her, investigate it more. The spectrum is vast, what's right/miraculous for one person is probably not going to be ideal for your dd.

Bear in mind there are lots of different types of ASD. With different underlying conditions. The help your daughter needs will depend on her underlying problems. One of the most helpful things for me was finding when ds1 was 5 a book written by Lucy Blackman who I still maintain is very like him. I learned loads from reading about her and what helped her and her ongoing difficulties (she's still pretty much non-verbal). But these things take time-which is what I meant earlier by it being a marathon not a race. It takes a while to find what your dd needs, and that can change.

The one thing I'd say almost every autistic child needs probably for a lifetime is sensory inetgration.

amber32002 Tue 15-Jul-08 14:31:18

Nikos, thank you, and I have been asked to write one by a publisher, so maybe it'll happen smile

Jimjam, I do agree with you. If you have a child who is profoundly autistic and there's no way to communicate and there's a real risk of harm or neglect or abuse later in life, I'd move heaven and earth (proverbially speaking) to get help for them that made their lives safer, more in their control, more positive for them etc. I honestly wish there had been social skills training around when I was younger, for example. The makaton and other signing/picture packs can be a blessing for those without language, for example.

It took me until I was in my 40s before I knew how to explain how my world was different to other people's. I didn't have the skills before then to realise how others thought and reacted. May sound strange, but it's true. Like today, I went to the local supermarket for the weekly shop. I have to plan the journey, I focus on car number plates and road signs, never ever passers by or drivers of cars. In the shop I could walk past everyone I've ever known without realising they're even there. I have to avoid the aisles with the flashing lights, I have to cope with the aisles full of smelly stuff like cleaning products, the total confusion of all the choices on the shelving, the protocols of queueing and loading and paying. I'm totally cream-crackered by the end of it. But for years this was 'normal' for me. I couldn't imagine that it was any different for anyone else. I thought shopping was supposed to be absolute sensory hell. So much is just so different...

jimjamshaslefttheyurt Tue 15-Jul-08 15:30:12

I do think that reading things written by people with autism is incredibly useful. I've done that right from the beginning, but finding Lucy Blackman's book was a godsend, because she was/is so like ds1. she has/had real problems with depth perception and compulsion- 2 areas that have caused massive problems with ds1 and she explains clearly what it's like. I suddenly understood why he went to pieces beneath trees for example. And what it's like not being able to talk etc.

I quite often re-read bits to remind me how bizarre his world is.....

sphil Tue 15-Jul-08 17:31:34

Sorry, slight hijack, but DIL - what sort of sensory integration therapy are you doing?

drowninginlaundry Tue 15-Jul-08 21:16:17

sphil - I take DS1 to see a private OT, a SI specialist, once a week, we go to Hopscotch on Harley Street in London. It's £70 per session which is a lot but we've cut ABA right down and seeing as we can't find a private SALT for love or money... well, I think it's worth it. The clinic has a sensory room with all the movement & crashing equipment, half a dozen different swings, in addition to equipment for working on fine motor skills etc. I also learn a lot by chatting to DS's therapist while he spins around in his swings.

DS absolutely loves it. You should see the grin on his face, he looks totally euphoric, he is so sensory seeking (vestibular) that for him those 45 minutes are heaven! We've noticed that he is a lot less 'jittery' at home, and he spends less time spinning & running around and crashing into furniture. Personally I think that SI rather than ABA is the key in managing DS's behaviours which are becoming more obvious/disruptive as he gets older - he doesn't have meltdowns, ever, but he gets wrapped up in sensory seeking activities that he cannot focus on anything else. In time, seeing how he responds, we would probably see more benefits, however we are leaving London in 6 weeks and will miss it (SI, not London!), no facilities where we are moving to.

sphil Tue 15-Jul-08 22:12:49

This is very interesting DIL - we are also planning to cut down DS2's ABA and increase SI work. We're looking at a version of Floortime which combines child led play with SI. We're not going to drop ABA but it'll become less dominant, for a while at least. We're doing it because DS2's language is so much better when engaged in this type of work (although we couldn't have done it if we hadn't done ABA first iyswim)

NikandE Tue 15-Jul-08 22:40:23

What can I say...I feel really emotional and so grateful for all your kind messages. It is really overwhelming that you should give so much support and love to a total stranger. I cannot thank you all enough. I really do agree that I need some time just to let everything settle down a bit and get my head round the dx. Just reading your messages makes me feel that I am not alone, I was really feeling very isolated. I want to write more but I'm totally knackered - DD only fell asleep half an hour ago and I'm going to follow her now.
I'm so glad I posted and so grateful again for all your messages. You guys seem totally amazing! thanks love xxx

jimjamshaslefttheyurt Tue 15-Jul-08 23:17:31

DIL is moving to our neck of the woods sphil. We should have a meetup. There must be some way of getting SI down here.

DS1 is having his first shiatsu this weekend. Someone experienced with severe autism and LD's. I will report back, I'm hoping it will fill some of the SI gap, and perhaps help him relax more that SI would. Am also hoping it will stop me getting punched!

Sorry NikandE for the hijack. Do take your time. And remember your little dd hasn't changed at all.

sphil Tue 15-Jul-08 23:31:53

Ooh is she? My OT is very good you know and very very keen on training up parents. I'm sure she's come on board if we wanted to set something up.

drowninginlaundry Wed 16-Jul-08 15:02:25

I've called up two independent OTs close to where we are moving to and yes they are SI specialists but they don't have the facilities to do SI. Personally I don't understand how the therapy would work if you cannot do movement activities, the vestibular input work is so important for so many kids.

DS's OT is considering moving out of London so I'm working on her to come and set up a clinic grin

Yes we should have a meetup! I'm also hoping, among other plans that I will have no time to actually execute, to start doing music lessons and start a music group for ASD/SN kids, I've discovered this amazing method designed by a Finnish music therapist that is being used in Scandinavia with great results.

sorry for the hijack NikandE, this is a perfect example of life as a parent of a child with ASD! We started by going the ABA route when DS was small but gradually it's the more leftfield stuff that is proving most beneficial. It's a fascinating journey, and although life is not terribly easy, it's definitely not boring... smile

BeautifulSpectrum Fri 18-Jul-08 17:09:30

Hi NikandE

My daughter was dx with autism last July when she was two, she is quite severe and is nonverbal.
She gets one hour home visits, one hour childrens centre (special needs) and four hours at a special preschool a week.

I went on a PECS course in London a month after her dx and she is able to ask for snacks and drink with a single PECS card.

Feel free to ask any questions, i will be happy to help.

xx

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