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Well DS is on the autism spectrum BUT

(20 Posts)
ALMummy Wed 16-Jul-08 12:46:05

whether or not he will score enough to get a diagnosis remains to be seen.

This is what the Child Development Team Paed said to me yesterday.

Just feeling rather frustrated after peeling an utterly distraught screaming 5 year old ds off me when we went to school this morning because he hates it so bloody much. Looks like DS is destined to forever remain "The Naughty Kid". I can't allow that I am afraid. I will bloody well home school him if I have to. What do they do for these kids that are on the spectrum but NOT QUITE ENOUGH. What is enough? Feel really disheartened. Where do we go from here?

Tclanger Wed 16-Jul-08 13:22:31

Message withdrawn at poster's request.

ALMummy Wed 16-Jul-08 13:30:01

Now everyone who got irritated with me for pursuing this because they all wanted to ignore it and hope it went away will say "See we told you he was fine", "Now stop going on about it". Even xh said "but that's a good thing isn't it it, means there is nothing wrong with him?". Everyone except me right back in denial.

allytjd Wed 16-Jul-08 14:30:24

I feel for you AL, to be honest not being sure if DS2 would quite qualify for a full DX is one of the reasons that I have not pursued proper testing yet. At the moment the fact that the SALT and the EdPsych say that he "looks like a duck and quacks like a duck and therefore is probably a duck" is enough to get him some help at school and that will do for the time being, if tey tested him more formally and announced that he was actually a goose IYKWIM I would be worried that they would tell us just to get on with it. I have a problem with DS1 too who I now realise has a fair few traits too (less than DS2 and less obvious at school), I don't really know what to do for the best for him, I get the feeling the teachers have written him off as a bit thick and shy!
I am still holding home schooling in reserve for emergencies too.
Families can be difficult, I think my inlaws just humour me to my face, god knows what they say behind my back!
If your familiy could meet other kids on the spectrum or even watch a docudrama (like that one about the boy who was helped by a pet dog) that might help recognise that you are on to something (it was seeing a boy with an ASD on the TV that was the penny dropping moment for me!).
You sound very determined, don't doubt yourself and hang in there, you will get there in the end, staff are always changing and you may come accross someone who can help.

Yummymum1 Wed 16-Jul-08 17:18:41

I really feel for you ALmummy.My ds1 has been diagnosed with AS but apparantly is an angel at school and they dont know what i am going on about.

He is one of these children who hold it all in at school and then come home nd let it all out!!

I have been going into school since he started in reception to highlight my concerns but they didnt see what i meant.

I assumed it was my crappy parenting and soldiered on but always knowing something wasnt right.

Eventually we were ref to paed who dx aspergers.

Great!! But when i tried to access services i was told ds didnt meet their criteria as he wasnt bad enough!!!!

It is really hard but i have shouted long enough and hard enough to now get all the help i think we need.

God knows looking after children with sn is hard enough,it isnt right that we have to fight for what we are entitled to as well.

Keep on and eventually you will get there.You know your child better than anyone.

misscutandstick Wed 16-Jul-08 17:45:29

I too was told that DS1 couldnt possibly have ADHD. I am a half decent mother who takes responsibility for her childrens behaviour.... and apparently that goes against you too.

It took 3yrs of nagging to get a Dx...

And guess what? yes i was right, he has ADHD AND dyspraxia and a few other bits and pieces too. By this point however, I had taken him out of school as he wasnt actually learning anything academically, but he was picking up bad habits from horrid children at a great rate of knots!!! His attitude was getting stinky and he was coming home more and more 'angry' (it was more kinda wound up ready to explode, and it was getting worse and worse).

Being home-schooled is/was extremely hard work. But the years of tears and frustration (from us both!) were definately worth it. He learned much easier 1:1, his attitude changed, and he was on the whole much calmer without having to compete at school with other children. I cant say its right for everyone, but it was for us.

I say keep banging on the door, and eventually someone will open it. Good luck.

amber32002 Wed 16-Jul-08 17:47:41

Private diagnosis? Expensive, but it might give you a better idea than you're being given here?

What worries me is how few people who are diagnosing ASDs are really well qualified to do so. The ASD support boards are always stuffed full of people who were told that they couldn't possibly have an ASD because (some reason or other) that turned out to be because the person doing the diagnosing didn't have the right info and didn't realise what questions needed to be asked. I'm not in a position to comment on whether that was the case here, but I'd trust your instincts as a parent and keep going if you can.

ALMummy Wed 16-Jul-08 18:24:36

Thanks everyone for your responses. I picked DS up from school today and his teacher asked for a meeting tomorrow to discuss next year and DS coping with Yr 1. If his school know how bad it is and I know how bad it is and we are both telling the Development team how bad it is I don't understand how they can decide from a couple of assessments how to diagnose him. The school are absolutely fabulous by the way, their SENCO is amazing and everyone there has really gone the extra mile for DS. If he doesn't get a diagnosis then basically the school are being shafted as well because they are the ones at the sharp end. Will they have to keep on making special arrangements for DS with no back up from the LEA?

Amber does a private diagnosis stand up with the LEA when it comes to funding for one to one and other services? Anyone any idea how much it might cost? I am prepared to go down that road if necessary.

twocutedarlings Wed 16-Jul-08 18:49:07

ALmummy, so sorry that your going through all this sad.

A DX doesnt matter when it come to LEA funding (statements ect) you can apply for an assessment of SEN without a dx, of course a Dx will help but its not a requirment. A statement is (or should be hmm) taylored to the childs needs, not the lable IYKWIM.

ALMummy Wed 16-Jul-08 18:59:10

Thats great to know TCD. Thank you. I can discuss that with DS's teacher tomorrow. I was feeling up against a brick wall thinking that only with a diagnosis could come a statement so that is great to know. I know that the school will fully back me on applying for an assessment of SEN with or without a diagnosis, Bless them. Do I need to apply for the statement, or do the school?

daisy5678 Wed 16-Jul-08 20:05:00

Our psychiatrist told us the same thing. She felt that he was very definitely autistic, but that his excellent language and learnt social skills might mask it enough for him to not score too highly on the ADOS test (and here, the ADOS test is the key part of the dx procedure for any ASD).

Well - J scored almost full marks (with full marks meaning v autistic) so I guess they can be wrong! And I mean that in a nice way - the psych is great.

As long as kids meet the triad of impairments criteria, they should get a dx. I think that the ADOS test etc. only work if they're being used to assess for subtle evidence re: the triad of impairments, not on their own as a dignosis tool.

YOU should apply for the Statement, as you retain control then and it's easier for you to appeal etc. I would apply ASAP and get all the evidence from the school off before the summer, or it'll be October before the ball gets rolling.

Good luck.

amber32002 Thu 17-Jul-08 09:53:34

If you've got an awkward LEA, they'll manage to find a way to stop just about anything, unless you're prepared to take it to appeal and hope for a win. A diagnosis is certainly handy to make people concentrate on the situation. We had our son DXd privately in the end, and all three Ed Psychs we've seen over the last 8 years have said the same thing - that he needed a heck of a lot of adjustments and help at school. Rather different from what we'd been told - that he was simply not good at school work and needed no help. (!) It cost us about £350 and may be more in some areas, so this is a heck of a sum for most families. But at least that way you have some clear ideas what to do to help your child, so it was worth it for us.

ALMummy Thu 17-Jul-08 11:42:05

Thanks. We have a meeting this afternoon with his teacher to discuss applying for the statement. His SENCO is fab and very well respected so I think that will help. It would be hard but I would find the money for a private assessment if I have to. I think it would be worth it.

AttilaTheMeerkat Thu 17-Jul-08 12:24:28

Almummy

Good luck with your meeting this afternoon.
Do not let any nay-sayers put you off applying for a Statement; you may be told that it is not worth applying for.

You can apply for a Statement without a diagnosis in place.

Apply for the Statement yourself; you have far more right than school ever have in that regard. You can appeal their crass decision if the LEA say no, school cannot do that.

IPSEA's website is good and there are model letters you can use www.ipsea.org.uk.

twocutedarlings Thu 17-Jul-08 12:27:02

Good luck the afternoon Almummy smile

Try and keep an open mind about what the pead said, would you be able to ask for a second opinion if need be??

bonkerz Fri 18-Jul-08 13:22:09

how did the meeting go?

ALMummy Fri 18-Jul-08 16:49:02

Pretty well. We are applying for a statement and he is going to do a further term in reception as he has only done two. I am really happy with this because the one thing I have always said about DS is that he always seems to get there in the end, if a bit later than the other kids, so I think this term will be really helpful for him. Also there are a few others doing another term too so he won't be alone, which is fab. On the whole I am pleased with how things are progressing for him. I was really worried about how he was going to deal with the more formal setting of Year 1 so this is a good result.

twocutedarlings Fri 18-Jul-08 17:42:04

Great news !!

At least your can relax abit over the summer smile.

When do you go back to the child development centre?

ALMummy Fri 18-Jul-08 18:26:23

Not sure. Have to wait for them to contact us now, but they have been pretty good so far and we didn't have to wait nearly as long as we thought we would. He was first referred at the beginning of this year and we are nearly through the assessment process already. From what I understand from reading other's experiences on here it has moved quite quickly. Just hope we get the result we need at the end of it all.

Thanks everyone for your interest and responses. The Special Needs Board here on MN has been incredible actually. Just reading so many others going through the same thing has helped me to accept things with DS much more easily than I think I otherwise would have. I remember this time last year just feeling utter fear whenever I thought about the possibility of ASD and now it just feels so common place to me. I have even started to recognise other ASD kids with their "two paces behind" parents when we are out, where I would never have noticed before. You are all brilliant on here.

amber32002 Fri 18-Jul-08 18:39:15

There's half a million of us in the UK, so it certainly is commonplace. That's a whole huge city-full of us. smile

The vast majority of that number are adults who escaped formal diagnosis, because it's only really happened in schools for the last 10-15 years. And they're still trying to get the diagnostic questions right, as they've realised they're still missing most of the girls (too well behaved compared to the average boy with an ASD, and we often behave differently to the boys in social situations).

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