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GP appt this week. Think DS has ASD. Hand hold/advice?

(26 Posts)
YoniFucker Mon 08-May-17 22:08:42

DS has always seemed different to other children. He spent most of his first year crying, and most of his second being labelled 'naughty' by pretty much anyone who came across him. I asked the HV for help when he was two and was referred to a parenting programme. I turned it down (wish I hadn't). DS struggled at nursery (regular screaming fits, refused to take part in activities, struggled to make friends, etc), seemed happier in reception (but behind peers in terms of numeracy and literacy) and now he's in Year 1 we're facing real problems. We've had various meetings at school, a play therapy session at the local Sure Start and I'm booked for a GP appointment later this week.

Can anyone advise me about next steps? What do I want from that appointment? A referral to a paediatrician / ed psych?

I keep hearing stories about how long it can take to get support in place so I want to make sure I am making the most out of every meeting/appointment I have. What should I be doing/asking?

Thank you!

TheSnorkMaidenReturns Mon 08-May-17 22:15:45

Are you going without your DS? That's probably the best way to start.

Make sure you have some clear examples of how his behaviour differs from his peers. Ask for a referral to the paediatrician. Explain there are problems at school.

Have you/teacher/DS been working with SENCO at school? What does she think?

Write this stuff down, and take your notes with you. It would help if the school would like him to be referred to. One of my DCs was referred directly to paediatrician by school nurse after a private ed psych assessment. Another was referred to paediatrician after I'd been to see GP.

Don't worry about the parenting course. That's water under the bridge now. And was probably for neurotypical babies. And you might not have ones of those ;).

cece Mon 08-May-17 22:21:14

I agree with snork. Ask for a referral to paediatrician . I didn't take my son with me. I listed the issues we had and I think I did cry at one point.

Don't worry about the parenting course. I am in no doubt you will be sent on more of these. <<bitter>>

YoniFucker Mon 08-May-17 22:25:56

Thank you for replying. I'm feeling totally overwhelmed by this process and I know there's probably a long road ahead.

Yes. Just me going to GP. It actually took me a while to book the appointment as I didn't want to take DS (some of the things I want to say would really upset him) and couldn't work out how to do it. When I finally spoke with the receptionist, she couldn't have been nicer or more supportive and has put a note on the appt that DS won't be with me.

I was going to note a lot of stuff down re differences (things like how he reacts at parties/ in social situations/ what his teachers have told me), how he is at school (behavioural issues, academically behind, concerns re anger/impulsivity/rigidity) and home (angry/anxious/disliking change etc). Are general 'behaviours' better, or specific examples of when I think he's acted differently to others?

School want him to be referred. They referred us to Sure Start for play therapy and suggested I make the GP appt. I've also now accepted the parenting course - I really don't care how I get help for him; I just want my little boy to be happy. I'd love someone to tell me how to parent him better now; I just wasn't ready to hear it then.

You mentioned a private ed pysch assessment. Did you arrange that? I've just been googling and read varying opinions on how helpful it would be.

Thank you again flowers

YoniFucker Mon 08-May-17 22:27:15

X Post Cece. Thank you.

I'm crying just thinking about the appt, so pretty sure I'll cry there.

(Not because I'm worried by the fact he might have ASD, but because of the guilt - the GUILT - that I've not pushed this earlier and that my DS is so bloody unhappy now)

ShiningArmour Mon 08-May-17 22:37:53

I was referred to paediatrician via GP and communication disorders team done school observation, took 2 years in all. Check out your local NAS groups for activities, meet ups, help and support, you don't need a formal diagnosis to join your local group. They also run work shops.

Catgotyourbrain Mon 08-May-17 22:38:06

Don't feel bad!
This is the age when the variety of early years behaviour crystallises and you start to see if a child isn't developing like their peers. I think it's a pretty typical age to start to realise if you have a non neurotypical. child.

My DS was around 7 when I finally accepted he wasn't in the typical range - and he doesn't have ASD - but ADHD

You need to ask for referral to CAMHS - but depending on area this may need to be via a paediatrician - so prepare for more than one appointment before an official 'assessment' .

Schools can also refer to CAMHS

Doing your homework can save you months of backward and forwards - write a diary or itemise the difficulties you may face In a typical day and take it with you - how is waking up, getting dressed, eating? Etc. Any specific incidents to illustrate your concerns?

Hobin the Sen boards here - they're great

TheElephantofSurprise Mon 08-May-17 22:44:32

Just sending positive thoughts for your GP appointment and the journey ahead flowers

user1492362793 Mon 08-May-17 22:44:53

I would say that what you want is a referral to a paediatrician. Also write down what you want to say, and if possible take someone with you for support and to take notes. Good luck. Hope you get what you want. It's OK to cry too, it's because you care xxx

YoniFucker Mon 08-May-17 22:59:36

Thank you all flowers

So, a) "hello GP, I'm here because I'm concerned about some of the behaviours my son is displaying.... what do you suggest?"

Or b) "I'm here to ask you to refer my son to a paediatrician as I think he has ASD"

I mostly just want to cut to the chase (with 'b') but wonder if 'a' would be better received?

Catgotyourbrain Mon 08-May-17 23:03:58

B is fine. GPs don't know anything like as much as you might think about these things. They ei look up the trust procedures - whether straight to CAMHS or via a paediatrician,

There is an online questionnaire for ASD in younger children you could fill out an go with - anyone have a link?

Catgotyourbrain Mon 08-May-17 23:06:28

Oh and also 'hello... etc, and school also has co ferns and has noticed similar behaviours'. If you have more than one setting you can mention this makes referral easier. Nursery had concerns too ?

Astro55 Mon 08-May-17 23:08:20

You can look online for a list of traits - the Gap will probably have a list to tick - school should also tick the same list and then compare.

I'll see if I can find a link

Astro55 Mon 08-May-17 23:13:50

YoniFucker Mon 08-May-17 23:25:45

Thank you. This is all so helpful.

Nursery always denied thinking he had SEN ("too early to think about things like that") but had him 1:2 with a TA and another child. His TA now runs the room ds2 is in at nursery so I guess I could ask her if there's any chance if her writing a mini report on what she can remember? (She often comments on how different DS2 is in comparison to his brother)

We also have a nanny - get her to write a report of what she notices with him?

Astro55 Mon 08-May-17 23:28:06

I'm sure you can print out a list of questions - but nursery should have them already - I'm surprised they don't

YoniFucker Mon 08-May-17 23:31:53

It's school now - my nursery comment was in response to catgotyourbrain about different settings.

I've been chasing school for the last week to arrange a meeting and getting nowhere. If I get one I'll ask if they have their own list.

YoniFucker Tue 09-May-17 19:45:07

Can I pick your brains again? I have a meeting with school tomorrow (to follow up behavioural issues but I also want to ask for feedback prior to gp meeting). Any specific ideas of what I should be asking them? I'm just writing a list of questions...

Astro55 Tue 09-May-17 20:44:58

Ask about triggers -

The behaviour will be the result of triggers - they should have an idea what they are

Usually the trigger is something small (someone took a pencil) that then escalated because one child felt agrieved - the other child not punished/not believed

Ask - that will tell you all you need to know!

TheFormidableMrsC Tue 09-May-17 20:52:47

Hi OP, can offer some reassurance. My son was referred by our HV at his 2.5 year check. He was exactly as you describe your son, especially as a baby, screamed non stop for at least a year, didn't sleep, had an aversion to noise. I also identify with all the other things you describe. Fortunately, that referral got him into pre-school early and he started the assessment for ASD. Yes, it's long winded, it took 18 months for a diagnosis but we got there in the end. He has Aspergers (although they now don't label as such). I think you do as others have suggested, write things down, the Nanny's observations are definitely important, ask the school to write a letter too. In terms of school, I would want a comprehensive list of the behaviours they have noticed, what is triggering behaviour, issues with food, relationship with peers and educational milestones.

I am very fortunate that my son attends a hugely supportive school and they have bent over backwards to help him. I hope this is the same for you too. Good luck flowers

YoniFucker Tue 09-May-17 21:10:04

Thank you. I'm making so many notes from this thread and have been exploring the links you sent.

Astro55 Tue 09-May-17 21:30:20

Ask about strategies they intend to use

For example - if he refuses to do X (play sports etc) what action do they take?
If he's know to bolt - are all the doors kept locked?

If he hits what is the punishment?

Is he asked to clam down
Does he have somewhere safe to clam down
Are you to be informed off each incident

- they should have a number bound book IF they have to restrain him - ask to see all reports of incident - you are allowed to have copies to show GP etc

YoniFucker Thu 11-May-17 22:03:32

UPDATE: Both meetings went well. School is referring him to the Ed Psych and preparing an IEP. GP is referring him to paediatrics.

That's a massive over-simplification as I'm sure you can imagine. It's been such an emotional week. There have been a lot of tears. I flip between feeling strong and assertive and like I'm ready to take on this battle, and wanting to hide in a corner and hope it all works itself out, that DS will just wake up one morning 'better'.

Thank you for your support. I really do appreciate it flowers

Catgotyourbrain Thu 11-May-17 22:47:06

Bravo! 👏👏👏

TheSnorkMaidenReturns Fri 12-May-17 09:10:07

So glad you are getting some progress. Hang on in there flowers.
I'm very familiar with the part-time strong and assertive Snork myself. I'm sure we are not alone.

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