High functioning autism

[oohlordylordy]

Just got diagnosis, this is what 'they' think DS has. DS is nearly 4.

Any help, advice, stories, tips would be so greatly appreciated, feeling very shaky, even though it is not a surprise really.

Also, what do we do about school in sept?

Thank you

'That is what 'they' think ds has' you dont sound too sure? Who are 'they'?

Ds has general autism, but in many respects he can be high functioning, in as much as he has high IQ and is very verbal. It wasnt a shock to me either, but still an emotion time, mixed emotions really i suppose, you are not alone and your ds will still be your lovely ds no matter what

I would make an appointment to meet with SENCO before he starts school and work out what help you feel he is likely to need and ask for this to be in place for when he starts.

What difficulties does your ds have?

Gah! Just wrote a long post and then MN logged me out and I lost it!

Haven't time to rewrite it all.

Yes, I have some issues with specialists. Will come back re. that later.

Problems: Basically
delay in motor skills
lack of skill in interacting with others
little understanding of the abstract uses of language, such as humor or give-and-take in a conversation
obsessive interest in specific items or information
strong reactions to textures, smells, sounds, sights, or other stimuli that others might not even notice, such as a flickering light
Also, had delayed speech but this is improving loads.

Just looking for advice on what (and what not!) to do.

thanks for replying.

What intervention have you had/do you have?

Has he attended any settings yet?

Sorry to hear of your dx.

Always horrible getting a diagnosis, even if it's not a shock. You're just feeling very normal emotions as a result. Just be gentle with yourself.

Have you been offered a primary school place? If so you need to apprise them of the situation so they can make any provision and also help prepare your DS for school. For my DS we had a long building of hours from just mornings to full days. I realise this is not practical for everyone. He also had a book we looked at frequently through the summer holidays with pictures of his classroom and his teachers. We had a few visits before too.

This board has provided me with so much support and help I really don't think it would have got through it all without it. So you've come to right place.

Take care. :)

Chuckeyegg - yes, we have been offered a primary school place which was our first choice and literally a few hundred metres from our house so feel OK with that. I have tried to call them but not getting answers. WIll try again now I have a more formal DX. I am hoping that they will let him build up hours gradually, as this was mentioned in the clinical psy. report. Thankfully, we are in a position of being able to deal with whatever hours suit DS (I don't work and while I was hoping to return, it can be delayed while I settle DS) and we also can pay for a private tutor to keep his reading and writing up to speed (he sees a private tutor twice a week to help him with phonics etc. as it's impossible for him to concentrate in a group setting. He does attend 'pre school' two mornings a week, but in reality this is nursery and is simply free play. While they are supposed to do some lessons, I can't see any evidence from DS or from any of the other children I know who go there (Am very friendly with 5-6 other mums there) but he is actually going so I am going to continue that for now.

Thankyou all for replying. I don't really know why it's upset me so much. It's not a surprise at all. I just wish I could protect him from it all.

Receiving such a dx from pros who you have had issues with is a big blow and you need to be kind to yourselves. What you are feeling is actually pretty much normal.

Re your comment:-
"I am hoping that they will let him build up hours gradually, as this was mentioned in the clinical psy. report"

They may or equally may not want to comply with this suggestion as made in the report. You will need to talk with them directly. What extra support do you feel he will need in a classroom, you write that, "he sees a private tutor twice a week to help him with phonics etc. as it's impossible for him to concentrate in a group setting".

Being the best advocate you can be for your son is also now the best thing you can do for him. Stand up for his educational rights, this is because no-one else will do so for him.

Has anyone ever mentioned the words "statement of special needs" to you?.

Hi, my DS has HFA / Aspergers. Its hard work, but the best thing you can do is get the school on board as soon as you can. Has anyone talked to you about assessment?

Many hugs by the way. Although when the dx came I was expecting it, it still hits you like a train. How are you feeling about it all?

The diagnosis can still be a big shock to the system, even when it's just confirming what you already knew, so be kind to yourself and give yourself some time to let it all sink in.

I agree with everyone else. You need to speak to the school SENCO about what assistance they can give with the transition to school. If your ds is at a pre-school/nursery they should have access to the SENCO in your area who works with children in Early Years settings. They should be able to help you liaise with everyone who needs to be involved.

Hi Ohlordylordy,

Sending some hugs - we got AS dx for DS (5) just under a month ago and I'm still feeling a bit shaky despite expecting the dx...

I'd echo what everyone else has said re: speaking to the school (in particular their future teacher plus SENCO) at an early stage.

Also, if you haven't already done so, it might be worth seeing if you can get a referral to an OT regarding the motor and sensory stuff. We had to wait a few months, but have now had quite a few sessions which have really helped DS (and given me plenty of advice...).

Ww x

Thank you all so much for replying.

I am going between feeling OK that i've come this far and tears. RIght now it's tears . I'm not really sure why it's hit me so hard, because I've pushed for this, whenever anyone said 'everythings fine', I knew it wasn't... but somehow now it's real. I feel so so sad for him. He is honestly the most adorable little boy ever.

I don't know how to go about getting a statement.

THe 'team' we have been working with are all private and the main Psycologist didn't seem to think that a statement was necessary but then he appears incapable of getting my address right either so I don't really have too much faith in him. Oh, and at my last appt. he told me it wasn't autism . So, there are issues with the people we are working with at the moment.

My main concern is education. I, personally, would like to HE on a 1-2-1 basis, but my mum and DH are both against it. They feel he 'has' to socialise. WHy? He hates it, He doesn't get it. Other kids don't get him. He ends up feeling isolated and teased and the other kids take the piss out of him. Why would I want to subject him to that?

He has strengths - academically and sporting - I feel it best to concentrate on those strengths and let him avoid the things he doesn't like.

But, I appreciate that I am being a mum, and wanting to protect him above all else. WHich is why it's so good to hear from others with more experience.

Thankyou all. You have been a life saver today.

thankyou Hothead - DS ADORES (I cannot stress this enough!) being outdoors and being free to run around. He is fearless, loves being wet, cold and mucky. He adores soft play (He comes down this massive drop slide which terrifies me!) He adores being around other kids (though his methods of trying to make contact are questionable to say the least!)

I really feel that 2 hours in a morning 1-2-1 then the rest of the day to run around like a loon would be best for him. His sister (turns 3 in August) will start pre prep in September so she is catered for 8-12 basically.

I just don't feel I want to subject my DS to a school he doesn't like, doesn't get (and they don't get him). I appreciate WHY, I just don't like it. I hated school. This may be part of the problem.

You should definitely consider getting him a Statement. To do so, you need to apply for Statutory Assessment - look here for further info.

Please ignore any professional that tells you 'he doesn't need a statement'. A Statement provides him with a legally binding entitlement to certain support - support that you can determine, based on what you think your child needs. If you do it soon, you could have one by September. Think about it.

Thankyou, Lovelylovelywine.

Also.... Great name.

That's the trouble, though lovelylovelywine, DO I just ignore them?

I've paid privately, I've been told one thing, then get told the exact opposite a week later, they get my address wrong repeatedly (even though I've gone mental and ENSURED they have the correct address) and then say things like 'oh, no, I don't think he needs a statement'.

I think that's why I feel so shaky about this whole thing. On one hand, I DO believe it, and on the other I don't / don't want to.

Who did you pay privately Lordy Lordy. Was it a well known clinical physch who is also in the NHS? Have you tried to get an NHS opinion?

Your son does sound like he has similar behaviours to my son who is 6 and just got dxed.

I completely understand not wanting to believe it. Sometimes I think that it only happens to other people, people with my background don't end up with SN children etc etc blah blah. All I know now is that I have a lovely little boy with ASD. I know that I have to do whatever I need to do to get him the best start in life. When I think he needs a statement I'll apply. At the moment DS is managing fine without. I can absolutely say that if he doesn't need a statement, he won't get one. The process to get one can be difficult and they don't hand them out to children with no needs that can't be met easily.

I think that you need to make an appt to see the SENCo at his proposed school and explain your concerns. See what they say and then come back to the experts on here (Attila etc).

Sorry, forgot to give you some

It's such a hard thing. You are not alone now. We are all here for you x

Thankyou so much Ben10. Your post is so very much appreciated.

Yes, well known clinical psycologist (I still can't spell that!!)

I don't really disagree with the DX. I know my DS is 'different'. I don't really get the whole thing about statements.

DS really (ideally) needs 1-2-1 to learn but also needs the social setting I suppose to try and learn about social interactions (FWIW, DS is a brilliant sibling / friend to DD)

You saw that I gave up with the pshyscshsy word and still spelt the abbreviation word wrong. I'm lucky that we just have a paed!

You are very unlikely to get FT 1:1 without a statement in a mainstream school as they will tell you how expensive it is. What sounds like what you want/need is FT 1:1 in a mainstream school so that he can be helped to learn the social rules but also to have the 1:1 to keep him on track in class. Reception is all about play with some phonics thrown in and a bit of mark making/writing. Definitely see the SENCO and say that is what you are looking for (if it is obv) and see if she can offer that from September.

She may say that she can. However if you don't have a statement then there is nothing legally to make the school give him the 1:1. The 1:1 may be shared with another child. She may be doing something completely different. The only way to ensure that your child gets the support that you feel that he needs is via a statement. Otherwise they can promise you the world, but actually deliver nothing. I haven't even gone down the statementing route yet but I know that is what the experts like Atilla would say.

I am going between feeling OK that i've come this far and tears. RIght now it's tears sad. I'm not really sure why it's hit me so hard, because I've pushed for this, whenever anyone said 'everythings fine', I knew it wasn't... but somehow now it's real. I feel so so sad for him. He is honestly the most adorable little boy ever.

Its ok and its normal. I pushed and pushed then when told felt like I had been run over by a train. There will be up and down days and you have to be kind to yourself. Take a good look at him as he is STILL the most adorable little boy. Just that now you can start planning for his future :)

My main concern is education. I, personally, would like to HE on a 1-2-1 basis, but my mum and DH are both against it. They feel he 'has' to socialise. WHy? He hates it, He doesn't get it. Other kids don't get him. He ends up feeling isolated and teased and the other kids take the piss out of him. Why would I want to subject him to that?

Because he is going to grow into a teenager and then a man and he is going to need to learn coping skills as there will still be people that dont get him when he is older. The best form of protection you can give him is to help him with his social skills. :)

There is no reason why you cannot HE and do it all at home and make sure you fill the week with clubs and social events, (I found clubs difficult as most here dont start for children under 6 even beavers) shopping with a friend of his and arrange frequent playdates and involve family being invited to play turn taking games etc. I would make a list of pros and cons before you make a definate decision.

Take care of yourself too x

My son is moderate severe ASD but normal IQ. I don't call him HF because in everyday things he's not, although his memory is amazing and he can learn quickly when he wants to.

We have a statement but through circumstance (statement initially refused, specialist help refused) ended up doing private intervention for a while. If that might be an option for you then you may want to consider private speech therapy or applied behaviour analysis (ABA).

We HE for a year with ABA (specialist autism) support. We got an ABA supervisor to train us in ASD specific teaching and taught him at home 15-10 hours a week. We showed lots of progress even though he was attending a pre school part-time and was not making progress there and not interacting. We went to tribunal to get ABA funded.

My son was then able to go into mainstream reception with ABA support and continue to have home learning (now done by tutors paid for by the local authority). He has 35 hours per week (as he is quite severe he needs this but not all children do) and initially went to school 3 half days (with the same staff that work with him at home). He now goes 5 half days. His main learning is done in the 1:1 out of school and then the school time is used for social skills, play and learning to adjust to that environment. It works really well. The other children are fantastic with him, even though he rarely initiates interaction he will respond to other children now and with support can play games etc. It is easier to start with the peer group when they are young as they are very accepting then and some children go out of their way to insist he joins in. But he really would not benefit from going FT and cannot yet learn in a large group. At the moment this mixture of home and school is working really well.

I won't pretend it is easy to get it funded, and many people struggle to find schools and nursery happy to have ABA staff even if you pay for them yourself (as LAs don't want to end up being made to fund ABA which is much more than their own provision they put school off allowing it). But having specialist staff work on social skills has led to a dramatic improvement for my DS. Pre-school was a disaster until we got specialist ABA Staff involved

Anyway I just wanted to know that there were options out there which are not mainstream or HE, but a half way house. You can also ask to flexi school (PT school with TA and PT HE). The best advice I can give you is to trust your instinct about what is right for your child. Professionals usually have their own agendas (usually to do with budgets) so you have to learn to trust yourself.