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Autism / ASD/ AS should I push for a dx or wait??? Opinions please!

(34 Posts)
KaySamuels Tue 29-Jul-08 20:16:53

Here is my old thread here if anyone not familiar with my ds.

The nursery/school haven great, we have a toilet visual timeline thingy set up at home, a photo info booklet to talk through with him about going into mornings in september, head teacher found me books etc, school senco/salt working with him sept too.

When I spoke to head she said that EdPsych said he would rather wait until around age 7 to dx, but he is definately on the spectrum. he also said if ds can manage without one to one then that is best for him in the long run. But he will have termly IEPS and edpsych can see him if anything changes.

I feel a little strange as his key worker has already told me she feels he needs one to one and I agree - I am a cm and he is exhausting and takes a lot of my emotional and physical energy (feel bad saying that).

I don't know whether to push for a dx or not. I don't want him to just manage I want him to be happy and moving forward.

I don't know what to do for best.

I was talking to DP last night too about how exhausted I am working FT cm'ing with DS, and don't know if a DX would help with this in terms of benefits?? Feel terrible about thinking that too as he is my son. sad

Felt ok a week or two ago but seem to have even more questions now!

Can I also ask other parents, do your ASD kids get exhausted? DS seems to find some tings so tiring bless him, he got in the pushchair at 5pm with a blanket and slept, had cried for about an hour before hand at the drop of a hat.

Thanks for getting this far. blush

Tclanger Tue 29-Jul-08 20:37:18

Message withdrawn at poster's request.

Tclanger Tue 29-Jul-08 20:39:09

Message withdrawn at poster's request.

KaySamuels Tue 29-Jul-08 20:44:40

Thanks TClanger. smile

This wait and see thing is not good for me, I like to know, have plans, etc! grin

I have not seen edpysch, he has not physically seen ds, I don't know what was put in writing, I really want everything in order (like ds) hmm.

I was looking through the advice on NAS webiste about a diary of what caring for your ASD child consists of, I do soo much that I wouldn't do with an NT child, but I guess as I only have the one I have never really considered it.

If there is help for us to be had I want it, is that awful.

I would not feel able to put ds with a childminder, I have to constantly work with him to keep the grop setting of mindees have harmonious with ds in the mix and couldn't expect a cm or day nursery to do it, and wouldn't want ds to go through that. {sigh]

KaySamuels Tue 29-Jul-08 20:46:23

No salts involved as of yet, and I think work planned with him is simply, casual, unofficial if that makes sense, nothing is in writing, I have not been given any written info anyway.

Tclanger Tue 29-Jul-08 20:54:33

Message withdrawn at poster's request.

Tclanger Tue 29-Jul-08 20:56:25

Message withdrawn at poster's request.

KaySamuels Tue 29-Jul-08 21:03:21

Is your SALT done privately?

It is all very frustrating and tiring to say the least.

A case worker type person would be great yes!

Geri2 Tue 29-Jul-08 21:18:17

mmmmmmmmmm wonder too why the ed psy is saying to wait, I often used to wonder who side he was on as seemed to sit on the fence! I'm going back a few years now, dd will be 12 next Month. My dd was orginally diagnosed with a 'severe language disorder'. With hindsight, I can see ed psy didn't agree with this and arranged for her to have an assessment at GOSH. If I remember correctly this was done through the GP.

Have to say I was distraught after the appt as I truly thought we were going there for an assesment of her language, and came out with a diagonis of Autism, with learning difficulties. Even tho we ourselves had thought it, we really weren't prepared to actually hear it from the proffessionals who had done the assesment.

With a diagnosis, it will open so many doors for your son, ie he will get the support he needs. Does he have a Statement? Being cynical here, but if he has a statement then the LA will have to provide the support he needs. Wonder if thats why the EP is saying wait until he's 7? Because at the end of the day, it boils down to money.

As to the dla - your Son can get this without a diagnosis. Just to warn you that it is a fairly draining form to fill in, as you have to think of all the negatives, when you are used to thinking of all the positives. You prob know this anyway.

Sending you support smile

KaySamuels Tue 29-Jul-08 21:27:27

I think it is to do with money out of the pot yes. sad

He doesn't have a statement no, it is that the ball was set rolling, and now they seem to be talking me out of it going further that has me worrying.

I am going to have to push to get a dx aren't I? Oh crap. (sorry)

Do I just send the IPSEA letter off? I don't know where to start.

Tclanger Tue 29-Jul-08 21:38:48

Message withdrawn at poster's request.

KaySamuels Tue 29-Jul-08 21:48:46

I take my hat off to you, it's great too that you feel he is now making progress, that's all we want isn't it - why is it so hard to put the help in place?!

Privately is just not gonna happen for us, we can't even afford the bills ATM. sad
I am so tired I just don't know how I am gonna find the time or energy but I know I have to.

Sorry I am having a pity party tonight, I have had a long busy day. sad blush

twocutedarlings Tue 29-Jul-08 21:49:39

Hi Kay, Yes just send the letter off ASAP.

Im sorry to say but i think the ed psyc has fobbed you off sad. There is no way on this earth that he can say that your DS is on the spectrum without meeting him shock this is so unprofesional, and again he has never met him so how can he say that he doesnt not require any extra support!!. Remember that the ed pysc works for the LEA. Also ed pysc cannot DX anything. Its also a load of tosh to want to wait until he is 7.

You need a referal to a developmental pead, do you have child development centre or CAMHS in your area??? I dont live that far away for you Kay (s yorks) i believe that can now asked to be refered to anywhere in the country, i can highly recomend the local CDC in my area.

Tclanger Tue 29-Jul-08 21:54:13

Message withdrawn at poster's request.

KaySamuels Tue 29-Jul-08 21:58:16

Thanks twocutedarlings sad

I just seem to be being fobbed off wherever I turn then. sad Went to gp and he told me edpysch does the dx'ing. hmm

Who do I ask about the letter to the developmental pead?? I don't know what's in my area, how do I find out?

Oh god I could crumble. sad

twocutedarlings Tue 29-Jul-08 21:58:45

I also used the guide to help me fill in the DLA form

cerebra DLA guide

But make sure you brace your self for filling out the form sad i have to be totally honest and tell you, that i found filling that out worse than DDs dx.

KaySamuels Tue 29-Jul-08 22:00:27

I haven't seen EdPsych

Edpsych hasn't seen ds

I was up last night worrying about bills and tonight it's gonna be ds.

twocutedarlings Tue 29-Jul-08 22:03:14

Im so sorry Kay sad its rotton we shouldnt have to fight like this, but all to often we do, i gets easier i promise.

Have a look here at whats avaliable in your area for DX, it varies greatly from area to area.

NAS Directory

KaySamuels Tue 29-Jul-08 22:07:14

thanks will have a look

twocutedarlings Tue 29-Jul-08 22:09:17

Try not to worry to much Kay (easier said, i know) your DS is still very young, it really is early days!!, im a strong believer that the earlier you can get a dx the better.

My DD is now almost 6 an has AS, she doing fatasticly well at school!!, she is a pleasure to be arounds most of the time now. All of the is down to her having the correct understanding around her at school. From what you have writen about your DS he sounds alot like my DD at the same age. There are lots that can be dont to help your little man, he is very lucky to have a Mum as on the ball as you are smile.

KaySamuels Tue 29-Jul-08 22:11:54

ok have found the details of a cdc in Hull, if I take this into GPs and insist on a referral to them will they do it?

looks like there is a lot in my area anyway which is good.

Thanks for your support, feel bad as I know there are parents dealing with worse.

Am gonna print the details out and get to bed.
Will have to get ds in his too, he is still sound asleep in pushchair (was hoping he would wake as I struggle carrying him up).

Will let you all know how I get on.

twocutedarlings Tue 29-Jul-08 22:17:30

I would make a list of your concerns to take with to your GP (try and see a differant one the last one sounds abit hopeless sad) the list of your concerns that you wrote about in your first thread should be more than enough for a referal.

AttilaTheMeerkat Wed 30-Jul-08 07:32:34

Hi Kay

Feel for you.

Termly IEPS (BTW you should attend a meeting with the school termly however, not all schools do this) are next to useless without anything concrete to back it up - its just pen pushing.

I also think the Head was misleading you re the EP - children can certainly be diagnosed before 7. EP as well is not qualified to diagnose either and your GP is hopeless (am angry on your behalf at this idiot) to suggest that an EP does diagnose. I'd change GP practice or at the very least see a different GP in the practice. You need a GP to refer you to the Child Development Centre and or to see a developmental paediatrician. You must be firm and insist to them this is done asap.

Think EP as well is also under pressure by the LEA (these people are employed by the LEA too) not to do anything hence all the stalling.

Send off that letter re Statement request asap to the Chief Education Officer of your LEA. That'll shake things up a bit. You will need to give them six weeks to reply.

Kay, you are your son's best AND ONLY advocate. No-one else is better placed than you to fight his corner for him.

Attila

KaySamuels Wed 30-Jul-08 08:24:53

only recently changed GP practice to this one, but thankfully it has about 6 GPs there so will ask for another one.

Have added to my list of DS speech and behaviour

I need to find this manageable again so off to write a to do list.

Feel much calmer this morning, thanks everyone for chatting with me last night. smile

KaySamuels Wed 30-Jul-08 08:25:00

only recently changed GP practice to this one, but thankfully it has about 6 GPs there so will ask for another one.

Have added to my list of DS speech and behaviour

I need to find this manageable again so off to write a to do list.

Feel much calmer this morning, thanks everyone for chatting with me last night. smile

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