I have some questions re. my son, Autism, and where we go from here?

[NatalieJane]

Firstly, this is my first venture onto the special needs boards, so I am really sorry if I get anything wrong, say the wrong thing etc.

It's probably going to be a bit of a long one, and might be a bit muddled because I'm all over the place at the moment.

My DS2 (4yo in December) has never hit developmental targets, he is still in nappies, he can't draw pictures (doesn't have a preference between his left and right, doesn't have pen control in either hand), his speech was delayed, though over the last 8 months or so he is talking a lot more but it is not understandable to strangers, he can't dress himself, he sticks to routines like his life depends on it (we moved house about 6 months ago, but this is still 'the new house' to him, not 'home', hates it when DS1 is off school for anything, has to sit in the same chair at meal times, has to have his bad covers just so to go to sleep etc.), he obsesses with things, basically I had an idea that he may have some 'issues' (- sorry if that is the 'wrong' phrase).

Our HV (ex- community medical officer, so I pressume she know's what she's on about?) came to see us yesterday, first time we've seen one in over a year, I explained all of the above, she added a few things that she had picked up on (he has hypo/hyper-something limbs, I can't remember the term she used, and have no idea what it is, or what it means) when she was going through her little check list he was 'overly intent on pleasing her', I'd have said he is eager to please?

She kept saying things like 'I think there is definetly something going on' ' something there' 'you as a mum will know that he is perhaps going to need some extra support' whereas actually, yes I had realised that he found things either impossible or very difficult, but I am not a doctor, I don't know what this all adds up to? I pinned her down (not literally!) and she eventually said she thinks he may have Autism.

She is refering us to the community medical officer, who she thinks will give us a simple diagnosis of Autism, and if we're lucky they should have time to get extra funding and some extra support for when he starts school next September. Also a referral to SALT.

I think I was in a bit of a shock to be honest because now I have loads of questions, that I didn't think to ask when she was here, but I don't think anyone can really answer them (Will he ever come out nappies? Will he ever be able to use a pen? If he can't write, does that mean he won't be able to read? - Like I said, I don't think anyone can answer those questions) But also questions like, if he is still in nappies come Septemeber, and if he still can't hold a pen, will he be able to go to a mainstream school? And, SHOULD he go to a mainstream school? Does Autism get worse over time? Does it get better? Will he get to a point where he just won't learn any more new skills? When he's having a proper show down paddy, do I deal with it the way I always have, or is that now unfair since we know there is reasonable chance he's not doing it 'just because' he can't have his own way etc.?

How long does it take to get measures in place for school? If he needs to go to a different school, how much say do we get in that? - Which one? Are they that few and far between that there isn't really a choice? If he can go to the mainstream school he's on the list for (very over subscribed and he's number 36 on the list for a 29 pupil intake) if he is diagnosed as being Autistic, even if he is 'allowed' to go to mainstream school, I know they'd never come out and admit it but would that be an easy name for them to scratch off the list?

100's of these questions keep swimming around around, and I just don't know where to ask them to get the right answers?

I keep trying to think stay calm and carry on as normal until we see the CMO, and take it from there, but it really isn't very easy.

So sorry for warbling on, I guess I am just trying to get some of it off my chest?

Hi Natalie and welcome to the SN Board.

You've already taken the first step in recognising that your DS appears to have some developmental delay problems and this has also been noticed by the HV - hence the referral. That's good.

Sometimes a dx can be made very quickly but sometimes it drags on for ages. The dx itself is not that important as far as school support is concerned because they provide assistance for the difficulties he exhibits and not just standard assistance because he has a particular dx. So if he can't hold a pen etc that's what they wil provide support for.

Don't worry too much at this stage about mainstream schools etc - the important thing is to get all his difficulties identified.

You don't say whether or not he's currently at nursery. If he is then the nursery should also have noted his difficulties and should have started the ball rolling to get him extra help.

If he's not in nursery then the best thing is for you to initiate the process that will get all his difficulties identified and may lead to him being given a Statement of educational Needs that will identify what sort of help he will require. Only then can you decide whether a mainstream school can provide that level of support or whether he needs a special school.

Have a look at the IPSEA website at www.ipsea.org.uk on which they have some model letters that you can send to your Local Authority asking them to start the Statementing process. It can take several months to complete the process so it's important that you make the request now so that some support can be available when he starts school.

Best wishes

Your ds can go to a mainstream school, its whether you feel he could cope in a mainstream school. If he has special needs, you would get priority on a criteria list. Does he go to nursery?

Make yourself a list of questions to ask, ive never heard of a medical officer, is this the same as a pediatrician?

Hyper-mobility in joints, ds has this makes writing very effortful for him.

Read as much as you can about autism.

Chase referrals up.

Thanks to you both.

Yes, apparently the CMO is a pediatrician, we live in a small village, I don't know if this will have a bearing on who he's seen by?

No he's not in nursery, I assumed he wouldn't be able to go because he's still in nappies (was how it was when DS1 started nursery, his friend couldn't go) but the HV said he can go to any nursery and to get him in. I just can't decide now though whether it is going to help him or not? My head is swamped. When I ask him if he'd like to go to a nursery, lots of friends to be made, lots of toys, etc. he says he doesn't want to, but I asked if he'd like to go and see a nursery and see if he likes it, and he says yes, so maybe that's the answer? Go and look and see what he thinks? He is overly sensitive to noise (other than what comes out of himself!), which is my main concern I think, it terrifies him and I just don't know how he will cope with it in an unfamiliar setting with strangers everywhere.

WetAugust, thank you for the link and the info on getting the ball rolling, am I able to do that at this stage without having had a 'formal' dx?

Claw3, do you know what happens if they say he has got Autism, but it's not that bad (or however they describe it?)? Is the choice still up to us as to whether he goes into mainstream or not? I don't think I could put him mainstream if he's still in nappies.

Also, do you mind me asking how the hyper-mobility affects your DS? Is it painful etc? I am an avid Googler, but I just can't bring myself to do it, am sure there are some awful stories out there and I'm not up for that yet.

Are there any recommended books etc. to read re. Autism? Again, I don't want to be caught up in the scare mongering.

As Wet said dont worry too much about which school yet. As your ds's needs become clearer, so will what school is most suitable for him. The choice of whether your ds attends mainstream school/special school is ALWAYS yours. But for a special school, you will require a statement (i assume wetaugust's link was to statementing i didnt look at the link) I applied for a statement without having a formal dx, although ds now has a dx of ASD. Your ds might well be able to cope in MS school with the right help. My ds is in year 2 and still soils himself.

Read about Aspergers, HFA and autism and see which you think best describes your ds. If you google, i havent come across any scare mongering, just lists of symptoms and behaviours if you like.

Lots of ASD children have sensory difficulties too ie aversion to loud of unexpected noise and other sensory issues.

The hyper-mobility is just like being extremely bendy, very loose muscles in the joints. Ds has a very light grasp of a pencil and has to press very hard to make his writing visable, the extra effort makes it very tiring for him.

I think your first port of call, is having your ds's needs/difficulties identified. You could ask for a referral to an OT too.

NJ Were you on the due in Nov 06 board?

Thanks again :) I feel like I am actually doing something now, rather than just letting it all keep going around and around.

I'll try the googling then and see what it brings up.

Stark, yes, DS2 was due in the Novemeber but decided to vacate after the worlds longest labour in December, were you on it as well then I take it?

I was terrified of autism too. So scared that I only admitted to and sought help for his ADHD symptoms and I spent 5 years working hard to help his autistic symptoms without consciously accepting they existed! Agree with claw, there's a lot of non-scary stuff on the Internet, and several very good books. National autistic society website and Tony Attewood books might be good places to start when you're ready.

DSs is now nearly 7, medicated for the ADHD, doing well academically at mainstream, coming along nicely with life skills (like using cutlery) and still working on the social and communication skills. In fact he's doing so well, it may be he's not quite going to tick enough boxes now to get a full autism diagnosis. And that will limit his access to help when he hits the next rocky stage, so in hindsight he'd have been better served by my getting over the denial earlier.

NJ. I was Bethbe all those years ago. My ds, due same time as yours has autism (probably High Fuctioning, but I would guard against the use of this term generally).

He was diagnosed last September (a year ago). This board has been my lifeline and the advice I have had has enabled me to keep my expectations high, of both him and of the provision. It can be hard work and tiring but it does pay off. There is a lot of very knowledgable people here and I feel that I the BEST hands me and ds have been in are these.

I grew up with a brother who had autism (severe) and i thought i knew all there was to know until ds was suspected of having autism and i didnt even recognise it, HV did!

Ds was nothing like my brother, in fact total opposites. I then realised i knew nothing! it is a massive spectrum and i began to read like there was no tomorrow. Knowledge really is power.

Good luck :)

Well the HV has just been again - unexpected, good job I'd done the housework already!

She says she has referred him to (am assuming the names of these people differ around the country?) the GP, who will refer to the CMO, who will then refer him to an Ed Phsyche (or something?) she said he will do the Statement of Special Needs, she's done the SALT referral, and she wanted to ask permission to refer him to Montage (could be way wrong with this name, it went over my head I'm afraid!) she said they will come to the house once a week or so, play with DS2, work on his speech, work on his fine motor skills, and his toilet training, and some of the sensory issues.

She's also looked into the nurseries (huge choice of two that cover two villages!) she's recommended one over the other for the simple fact that they have a much more structured routine, which he will respond to better than the other that is more of a free for all apparently. Though I don't even know if it's possible, I hadn't thought but I am going to have to stay with DS2 when/if he starts, and I've no daytime childcare for DS3, DH can't take two and a half hours off work every day for possibly weeks on end, and although I am just about to start my own business I am not going to be making any money for a while yet, and we can't afford for DS3 to go to nursery at the same time.

Do you know, this is a whole new world to me, I just don't know where to start, pathetic I know, I am usually the sort of person that if I don't know something I will ask, I will find out, somehow I get the answer, but this is just beyond me, HV is saying things to me and I just don't understand them, I have no idea, then trying to remember everything, that might as well be being spoken in a different language, to tell DH.... think there will be a large glass of wine waiting for me later!

She sounds like a good HV, she is referring and getting things moving. Ds's HV was great and did the same.

Dont be afraid to ask her to write down to whom she has referred and what they do. You could even give her a ring and say there was lots of information for you to take in and ask her to clarify.

Mark down the date she has referred and then you can start chasing up for appointments. You could even phone your GP at the end of the week and ask has he referred yet.

Did you explain your nursery/child care arrangements to the HV, she might be think of a solution or perhaps funding etc.

Everyone on this board was in exactly the same situation as you to start with, not pathetic at all. We are all fumbling our way through the best way we can. The good thing about MN is there is always someone who has already been there, done that and got the t-shirt to hold your hand and offer support and advice.

You are usually the sort of the person to find answers, you will become even more like that kind of person now!

Hi

My DS1 is very much of age with yours - he wil be 4 in November. Has been diagnosed ASD and siginificant speech delay (is non-verbal). He is also still in nappies (toileting issues very common with ASD I understand). I really feel for you and I know that there are lots of people on these boards with lots of knowledge about the system.

But it may reassure you to hear that our DS1 attends a mainstream nursery attached to a primary school, full time (9-3:30). They change him once a day (he helps by never pooing at nursery!). He also needs help with feeding himself (he is very reluctant). We agreed the approach with the SENCO and the nursery teacher and it seems to be doing okay. We are also in the process of getting him assessed for a statement.

Be positive about what your son can do. He is talking, he can hold a pen. I'm not trying to pull rank as it were but mine can't do either. What helps us is seeing that he is clearly still learning new things and developing - just not in the same way or at the same rate as a "normal" child.

Sorry, this is a bit of a ramble but wanted to say - you are not alone . Btw if your DS gets a statement he'll be able to attend whichever mainstream school you want him to - as long as its a state school.

NJ

Couple of points from your last post:

I don't think that the HV or anyone else you listed can actually start the Statement request - that has to be done by either you writing directly to the LA or by the nursery / school. He needs provision before he starts at school so you'd be best advised to write seeking that Statement yourself.

Also 'Montage' - I think you might mean Portage. This is support for pre-school aged children.

Best wishes

Welcome to the board. My DS is nearly 4 and has autism. His speech is very delayed he only has a few short phrases and a massive collection of nouns. It's portage not montage and good they are coming quickly we did not get any. be careful about rules for portage here they take it away if a child goes to nursery or gets a diagnosis and get passed onto to autism outreach. Ask for a statutory assessment now yourself to have any chance of it being in place by sept they will get a report from educational psychologist but will be a wait for EP. Your HV sounds fab you have had more help in a week than I have in a year! Look widely for nurseries and schools if you mention autism you can tell on the phone which are put off and which welcoming usually. Apply for benefits you can get Disability Living Allowance look at Cerebra website and Contact a Family for info. If you get DLA can also apply for carers Allowance does not matter what your partner earns and also get disability element tax credits . You can also self refer to social services for disabled child assessment and carers assessment. We get direct payments instead of respite care which you could perhaps use for childcare for other child. Cerebra have free lending library of books. Also find out about parent groups as other parents are best source of knowledge about schools. Yes my DS is also still in nappies 4 or 5 is pretty typical for ASD. Also yes he can improve with help. Most Councils push children towards mainstream but look around are there any asd units or dual placements. Lots of children do best with specialist teaching when young then move onto mainstream at 6 or 7 when they have caught up on skills. The council should have funding streams for nursery to employ a 1:1 so you should not have to go too. School based nurseries usually have this money delegated to them already. Just to say you do not need a diagnosis to apply for benefits.

Thanks again everyone, really, you're all helping so much already, probably in ways you don't even know - or maybe you all do?

Twowillbefine, I'm sorry, I really didn't intend to sound negative about what he can't do, I was just trying to show the reasons behind the HV's thoughts I suppose. In the last 7/8 months his speech has come on so very well, he has changed from pointing and 'hmm-ing' at things, to saying 'car' 'cup' 'ball' etc. to 'Can I have some milk please' or at least trying to say it, we can understand probably 80% of the time, strangers have to really concentrate, and even then most of the time look at us for an answer. And he is fantastic at jigsaw puzzles, will sit for hours with a 100 piece one and crack it. He is brilliant with his little brother, and puts up a good fight with his big brother! He's absolutely hilarious, and so very kind and loving. He is a great little boy, and I wouldn't change a hair on his head. I just want to do my best to ensure that he has every type of support he needs to lead a 'normal' as possible life.

Sorry, have ran out of time, bedtime awaits, may have to contiue this tomorrow.

Thanks again to you all, really, I will reply to each of you either later or tomorrow.

NJ - I'm sorry I didn't mean to imply that you didn't. He sounds like a lovely little boy and I totally understand where you're coming from and the kind of questions going through your head, cos they're going through mine too. And I believe my DS will be able to develop, toilet-train, read/write etc because he does continue to make progress. Just a bit slower than I would want!

Twowillbefine, :) See that's one of the questions I was asking, will he ever be able to do the things he can't do now? Everything from toilet training, to getting himself dressed, to handling loud noise, or strangers, I just want to make sure that whatever his potential is, that we reach it, for his sake.

Claw, I think I will give her a ring today, she certainly seems to be trying her best for DS2 so I am sure she wouldn't mind going through my questions, or at least some of them!

Wet August, I will at the same time ask about the Statement again, she did say the Ed Pyshche(sp again!) will do it, but have read a lot about how long it can take for all these cogs to start turning so I will ask her if it's worth me doing it now. While she is being so pro-active, I don't want to step on her toes.

Agnes, what's a statutory assessment? Is that the Statement? I'll have a Google for any ASD units and dual placement's around as you've said, I had no idea such things even existed. TBH I'd not even thought about if we'd be entitled to any benefits, but will look into it because as you say we could very well use them to pay for childcare. I'll have a look at the website you've mentioned.

I know I keep saying it, but really, thank you guys, I said to DH last night, it's like I can't stop thinking about it, but I don't know what to think about, I know a lot more than I did two days ago, but every thread of any thought ends up in more questions. DH read this thread last night, he is in the same boat as me, but in some ways worse, he's not even seen our HV, he's not had that face to face opportunity to ask his questions, or hear first hand what she's saying, so you're all helping him as well :)

Yes statutory assessment is the statement. You should be able to get alot of 1:1 support without it but in the midst of cuts you will only be legally protected if it's in a statement and usually you can only access special schools with a statement. Often councils try a graduated approach putting in a bit of help at a time but evidence shows intensive early intervention has best outcomes. You need to google sen code of practice and order free copy but don't expect your council to follow it. But do start the process soon our council made us go to appeal twice so it took 18 months to get a statement. Do you have a carers resource near you they often have advisers who can help you fill out DLA forms as there is a knack to it. Often we do lots of things which seem normal for us but are over and above the care a 4 year old should need. Definitely apply we got £50 week DLA and £50 week carers plus extra tax credits so does help alot. It is alot to take in. Look at NAS they run workshops called Help courses for those with new diagnosis. You can find out pretty much anything on this board it's a lifeline.

OK, I am going through the links one by one, starting with the IPSEA link WetAugust gave above, I've found the letter to send, but it says about which school DS2 is at (none obviously) and about how I feel his school isn't giving him the support he needs. Maybe a silly question, but do I just take that part out of the letter? Or should I just use the legal jargon within my own letter? And explain he isn't at school yet, but we want in place for when he starts? Also, exactly who am I supposed to send this letter to? I have no idea.

Am sure the other links will throw up questions as well, but figured I'd best sort one out before trying a second!

OK, next on the list was to look if there were any ASD units, I have found one about 5 miles away. It's called Hillside Specialist School, in Longridge, Lancs. Don't suppose anyone has heard of it? Website looks good, if that's anything to go off? I think I would feel much happier having him going somewhere where they will understand him and his needs more so than, e.g. the school DS1 goes to. The classes have 6 children in with a class teacher and two TA's, that's 1:2, if he goes to mainstream, it's 1:10 at best.

So if I show DH this, and he likes the look of it for starters, what do we do next? Do I contact them? What would happen if we don't have the statement in time for Septemeber?

Sorry for all the questions again

I think a Health Visitor can make a referral for Statutory Assessment (CoP p 75 7:7 a referral by another agency) however the SEN charities all recommend that parents do this themselves.
Have you got yourself a copy of the SEN Code of Practice? You can ring and request it free on 08456022260
IPSEA have a telephone helpline if you can't find the information you are looking for.

Thanks Benson, I was just downloading the CoP then :)

You can adapt it by saying that whilst he is not in school yet he has the following needs and then list all the things you have put on here. Also put that he is going to receive Portage and that your HV is involved.
It is important to get the Statementing process in motion before you set your heart on a particular school. Naming the school comes right at the end of the process after the draft Statement has been drawn up.

Oh right OK, thanks, will get working on the letter then.

Hi NJ!

I'm on the autism spectrum, and sometimes potter about on here answering a few questions for parents who ask things like "will he ever be able to do the things he can't do now? Everything from toilet training, to getting himself dressed, to handling loud noise, or strangers".

1 in 20 of us doesn't make a lot of progress. The rest do. How far we progress is very individual.

At your son's age, I was just repeating words meaninglessly and rocking in a corner. Thanks to a combination of very rule-driven schooling and a brilliant friend in secondary school who taught me social skills, I'm now a mum with a lovely hubby (also autistic) and an equally lovely teenage son and a good job (plus being an adviser about autism). I've had to do everything differently to other people, but it doesn't make it impossible to do or worse for us. Just bloomin' different and sometimes very challenging indeed.

But it's a bit like people who climb mountains. They don't think "heck, the mountain is really hard work and it's cold and 'orrible", they think, "wow, a mountain - OK, one step at a time, because the triumph of that one step is just amazing, and the views from the top are brilliant!" So it is with being a parent to a child on the Spectrum. It's a mountainous road, but boy the views are quite something when you get to the top. You need lots of support navigating those mountain passes at times though. Be kind to yourself, always.

Autism is often a mixed blessing. Yes, I have days when I'm very or [confused, and there's things I can't see and can't do (like people's body language and eye contact and hearing their tone of voice). But my brain lets me see and hear detail that others cannot, and lets me find great joy in things that others simply don't understand. We're often rubbish at explaining the joys to people, so often it looks like we're just having a really appalling time. It's why parents get scared of autism - because of the situations where children have multiple disabilities (e.g. autism and learning difficulty and speech & language difficulties) and really do struggle to make sense of the world.

I'm blessed with so many good friends now who are on the autism spectrum - whether low functioning or high functioning, and I wouldn't be without any of them.

Brilliant people here who are so much help to everyone. Ask away.