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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Oh shit. Off to see the Doc and feeling v. nervous.....

35 replies

elephantpoo · 23/01/2012 09:27

Finally (after about 2.5 years of it being at the back of my mind) off to see the doc today to request a referral for DS re. poss. ASD. AND I'M REALLY SCARED. I know I'm going to blub / forget some main "symptoms" and generally come accross as neurotic. Mainly though, I want to get things right by DS. Well, off I go...........

OP posts:

moosemama · 23/01/2012 09:30

Elephant, hope I'm not too late.

If you have time. Sit and write a list of your main concerns to help you remember them - even better would be to print a page of a website that shows the traits and refer to that.

Don't worry about crying, they're used to it and it just shows you are a loving parent who's really worried about their child.

Good luck.

Chundle · 23/01/2012 09:36

Don't worry elephant I cried too! Good luck and let us know how it goes

dietstartstmoz · 23/01/2012 09:43

write a list of concerns. I have cried over every professional I have dealt with for DS2, but I didn't cry when we saw the GP to ask for a referral, although I felt so choked up, and blubbed when I came out. Don't worry if you do blub, you are doing the right thing. Big Hugs

mariamagdalena · 23/01/2012 09:54

If it doesn't go to plan, just rebook o your way out!

IndigoBell · 23/01/2012 10:09

And make sure you ask how long you need to wait for the referral.

Because you need to know when and who to chase it up.......

(Loads of times the doc has promised me a referral which has never materialised....)

If it's for a paed the govt guidelines were you had to be seen in 6 weeks. Not sure if it's still the case - but I think it is.

mrsbaffled · 23/01/2012 10:13

Good luck! I cried in my appt at GP too! I had a list - I couldn't talk him through it, so just thrust it into his hands! We saw a paed within 6 weeks.

Original poster

elephantpoo · 23/01/2012 10:15

Thanks guys. Just got back. Not sure what I wanted out of today, but gp is getting school nurse to observe him in class and a report from his teacher. Not that it will tell him anything, as he seems to hold it together until he gets home. I am to go back in 3 weeks and in the meantime try and record DS's habits, esp the weird head tilting thing he does.
I managed to hold it together for about 5 seconds, and then blubbed.
Don't think I should've mentioned by brother (who my Mum always suspected had Aspergers, but didn't go for dx as she didn't have my ad's support) - now gp thinks I'm searching for symptoms. I took a list, but didn't get it out so forgot to mention his inability to try and understand ideas / jokes / bits of conversation explained to him (and his catchphrases "I'm confused" "I don't know what you mean" that he chants over and over) and his interrupting / talking over people. Feel like an idiot.

OP posts:

mrsbaffled · 23/01/2012 10:23

(((hugs)))

IndigoBell · 23/01/2012 10:38

The GP can't dx Aspergers. (Nor can a teacher or school nurse)

He needs to refer your DS to a paed.

In 3 weeks go back and demand ask for a referral to a paed. Type up your list of concerns and give it to him (so he can include it in the referral note) - and absolutely insist he gets a referral.

JaneMare · 23/01/2012 10:52

hi there ('new' regular here btw, had a NC)

i agree with Indigo's suggestion of going back, but in a couple of weeks after you've kept a detailed diary of how your DS 'is' - all his quirks, behaviours, triggers, as much as you can get down, then take that back with you. not so much a of 'things you think are ASD' but a diary of your day will help give a picture of how this affects you all.

this with alongside your other 'list' can only help?

i was a wreck before (still am if i'm honest) going to our GP appt, but the notes helped so much - and tbh, if you're worried enough about your DC to warrant asking for assessment/intervention, a few tears will help relieve that stress sometimes.

your GP can think what he likes of you, he can't dx your DS - and it's him you're concerned about.

hth, and keep posting

chocjunkie · 23/01/2012 12:11

GPs (and HVs) can be very dismissive and know often nothing about ASD.

I had countless contacts with GP and HV between DD's 2nd and 3rd birthday. nobody wanted to refer me because DD's development "was fine". in the end I want back to GP and demanded a referral. I said I am not leaving the office without a referral for DD. I know we only got referred because I was a pain in the back.

10 months later DD was diagnosed with classic autism and we are just looking at special schools for her. but yeah, DD "is fine" .

be firm, don't let them fob you off if you have any concerns. put your foot down. good luck :)

Original poster

elephantpoo · 23/01/2012 14:15

mrsbaffled - thank you x
IndigoBell - I know you're right that neither GP, school nurse or teacher can give a dx DS. Think that's why I feel a little deflated-the next few weeks are going to reveal nothing. I'm just sitting down now to get my head around writing my list. God, I'm shit at being forceful - it's resting on me to be demanding and that's really not me (I need to "grow a pair")
JaneMare - the diary thing sounds like a good idea. What makes this even more difficult is that GP is a neighbour (same postcode area) and has a boy in DS's class. He sees DS in school mode (ie. coping) and I'm sure he thinks I'm mad.
chocjunkie - he was v. dismissive of the things I mentioned. He said that sensitivity to smell / fussy eating was just related to his age. He said that 1 good friend (who he twists around his finger BTW) is to do with his age. He said his snorting / throat clearing was seasonal (didn't answer why he may be shoulder shrugging / head tilting). Didn't address his sleep issues.
All of these things (and the ones I forgot to mention) on their own can be explained away. But they are not in isolation. Felt like saying (and prob should've) that I've tried talking myself into the fact that DS is fine, but keep putting all of these things together and it leads me back to knowing there's something behind these things.
He said that Aspergers / ADHD (what is ADHD?) wouldn't be able to hold it together all day at school and only present traits at home.........is he right? Maybe I'm barking up the wron

OP posts:

IndigoBell · 23/01/2012 14:26

He's not right :(

You're not the first person to get stuck trying to get a referral from your GP.

If he won't refer you might need to change GP.

I don't necessarily think a report from school nurse and teacher are a bad thing. Depends what they say :)

When you finally get the paed he'll ask for a report from the teacher, so going in with one won't hurt.

mariamagdalena · 23/01/2012 14:28

You could always print off these recent NHS autism guidelines from NICE and bring them along next time . Hopefully their main use will be to sit in you handbag and give you a bit of confidence pages 16, 17 and maybe 20

mariamagdalena · 23/01/2012 14:37

And you could alway openly say "Look, you see him acting fairly normal, so you're bound to think I'm being neurotic... maybe I am, and I'd love you to be right.

But I've been worrying about this for nearly 3 years and nothing I've been told has addressed my concerns, so I need DS referring even if it's just for reassurance."

EllenJaneisnotmyname · 23/01/2012 16:39

ADHD is Attention Deficit Hyperactivity Disorder, which combines inattentiveness with excessive activity and is only DXed if it manifests itselfin more than one area, ie home and school. High functioning ASD children seem to often manage to hold their behaviours in during the school day but let it out at home. GPs don't seem to always understand this.

dietstartstmoz · 23/01/2012 20:40

Elephant, well done on getting through today. Do keep a diary, and as others have said see what the school say as well. If you are not happy with what the GP says then do try and go elsewhere. Don't worry about not feeling brave enough to be forceful, if you do go down the road of seeking extra help for your DS you will soon find you do 'grow a pair', and become more forceful. I know I have!

creatovator · 24/01/2012 09:25

Elephant, I agree with all of the above.

Also, I'm not good at being forceful either, but have become very firmly persistent. Not rude or shouty, because it's just not me, but I keep going back until I get an answer. The professionals soon learn that I won't go away until I'm satisfied.

If you find it hard to do yourself, is there someone who can go with you to speak on your behalf?

Original poster

elephantpoo · 24/01/2012 20:00

Thanks everybody :)
The more I think about it the GP made me feel so stupid. Like I was making things up / exagerating. Was hinting at his traits being bevahiour issues / typical boy behaviour and hinting at parenting-type training.
Think he'll suggest an eye test for DS when he sees the habit he has with his eyes and head (going to try and film it at some point.......he's nearly crashed his bike doing it ) So took DS for an eye test today (it's getting worse and he says he has to do it because his eyes ache) Was hoping they'd say he needed glasses, so I could tick it off my list, but his eyes are fine.
Got a feeling this is going to be a bumpy ride.......

OP posts:

IndigoBell · 24/01/2012 20:33

Hate to tell you, but a std optician tests for hardly anything.

It's perfectly possible his eyes do hurt and the optician wouldn't know why :(

What does he do with his eyes?

IsabelOSullivan · 24/01/2012 21:09

What's this with the head tilting thing? sounds like something my son does.

Original poster

elephantpoo · 25/01/2012 09:42

He kind of rolls his eyes, but his head joins in too. At best he moves in a small circular motion, and as it gets worse the circle gets bigger......to the point where his head is facing over his l / r shoulder (hence nearly crashing his bike) When I point out that he ought to look where he's going, he says "I am" or "I'm trying".

OP posts:

Original poster

elephantpoo · 25/01/2012 09:44

Sometimes it's just a look over one shoulder. Either way, it's not nice to see

OP posts:

creatovator · 25/01/2012 10:01

The thing with his eyes could be a sensory thing. I took DS to an optician who specialises in children with dx ASD, dyslexia, ADHD and other things. He explained everything to us and did 2 eye tests with DS. We got NHS glasses with special tints. They helped to stop the sensory overload in busy places.

I'm not sure if they'd help aching eyes, but worth a look into. I'll see if I can find a link.

IsabelOSullivan · 25/01/2012 10:05

caveat about diagnosis over the internet but the head/eyes thing could be dystonia. It won't show up on a EEG or an MRI I don't think. Its not a well understood thing and lots of doctors don't know about it. DS has it. It can be associated with mood swings, anxiety etc. Take loads of video if you can. Thats the only way we got help. I think the health professionals have been much more concerned about the dystonia than the behavioural issues which can easily be put down to 'his age'. even though the two things are linked IMO.

Dystonia can be really severe but in our case it is very mild if that's any consolation. and it can disappear altogether over time.

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