Possible Aspergers - What to do?

[DanJARMouse]

Evening all.

We have had concerns with DD1 (6.8yrs) for some time now, and after researching the web, we thought it to be mild Aspergers. After another incident at school this week, we had a meeting with DD1's teacher last night.

She actually mentioned Aspergers before we did, and now Im a bit shaken up with what happens next. (We are in Scotland if it makes a difference?) DD1s teacher has said she will talk to Assistant Head (Head off ill) and also to the regional "professional" (no idea of title) and get back to us next week, but she did say we would be quicker going through the GP.

I guess I just want some advice from people who have been where we are now, as to what steps need to be taken. I get the impression I need to be ready to fight for DD1 but her teacher did seem to be on the same page as us so to speak.

So, if anyone can help, I would much appreciate it. Im a mess to be honest with so much going on in my head!

I am sorry, I don't know what the process in Scotland might entail, or how long the process might be.
In England, it can be quite drawnout - a meeting with a developmental paed, then a 6 month wait or so, another meeting with dev paed, maybe SALT (Speech and Language Therapist) involvement, maybe camhs (child and adolescent mental health services) involvement.

I got referred into all of this via my hv, but dd1 was only 20 months old - GP is a good entry route.

if you have done reading, you will have come across the Triad of Impairments? if not - a good place ot start.

try ot find out what scales might be used to assess your dd - there are several, and there is bound ot be someone on here who has been through that particular route (eg dd1 was assessed using the Griffiths test, and has also had Vineland assessments for OT) and can advise as to what might happen.

It is great that oyur school is onside. this will help a lot.

what issues has your dd been having, which made you do yuor research inthe first place? again, there is probably someone here who has been there and wears the tshirt every day!

It can be a real whirl when you first start thinking these htings, but at the bottom of it all , your dd is still your darling dd, the same little girl she has always been

I hope someone with experience of the Scottish system (and I know there are a few!) will be along to help you out some more.

Read and learn first, then if you do have to fight for your DD you will know what you are doing, and what to ask for.
Some schools are fantastic and will work in partnership with you to achieve the best for your child.
Tony Attwood has two books on Asperger's Syndrome, one is a shorter version of the other.
That's where I'd start.

oh, just to add to Goblin's recommendation of Tony Attwood - Luke Jackson's book is a good read too. Dsd found it useful to read (she was older than your dd), and it gives an interesting insight into how a child with Asperger's views things (obviously only one perspective, but still interesting)

Thanks for all the kind comments so far.

In a nut-shell, DD1 has zero social skills. Seriously, she has no idea how to integrate with people! She mimics words and phrases rather than say anything of her own thinking. When in an uncomfortable situation, she reacts with nastiness (incident this week was taking one of her friends crisps and then spitting them back in her face when she asked for it back). At school she is so bright, so clever, top of the class for everything academic, but doesnt try. She cannot put her hand up to answer a question, it just gets blurted out before anyone else has a chance, she constantly acts the "teacher" in group situations - cannot handle any other child to tell her what to do, if this happens, she gets nasty again.

If routine changes at school or at home, man alive, do we know about it! We had a 2hr tantrum the other afternoon because we asked her nicely to (along with her sister) to tidy their bedroom. If we say we are going to do something, and then cant do it, she goes into melt down.

She invades personal space all the time, refuses eye contact and has an obsession with the time. She cannot bear the sound of coughing or anyone being sick - she ends up covering her ears and crying. There are sensory issues with clothes and shoes (especially shoes) in that everything feels too tight/uncomfortable/itchy.

Im sure there is so many more, but they are the big day to day things. We have tried EVERYTHING to address the issues, and yet nothing ever improves, in fact, since she was 3yrs old, things have gotten worse and worse, and really peaked in the last 12 months.

With regards to a GP appointment, should this be done alone first, and then take DD1 along..... we havent mentioned anything to DD1 about all of this yet as dont want to worry or upset her further.

Def sounds like Aspergers.

Make a GP appointment - but there is no need to take DD along. Tell him all these signs and ask for a referral to a child development paed.

Does sound like Aspergers/ASD. I'm in England; my experience is that if you do it through the GP (and keep nagging about referrals, appointments etc.) everything goes ten times faster than the school -> ed psych etc. route. DD has you to fight for her and the sooner you get a dx/statement the quicker she'll get help at school.

treat her now as if she has AS read up on it like the others have said keep a diary of things how they affect her including reactions to taste touch sound as people on the spectrum often have sensory problems and do as indigo say's your DC without help will get worse as gets older in as much as she is not getting the support she needs atm, i did mine through the GP and development centers paed and was then sent to salt ed psy camhs ect it seems its much harder when you start very young they want to keep a long watch over them but my DS was late being dx as i tried for over two years befor and was given the usual run around which was really stressing DS out so i gave him a rest then started again when he was a bit older but this time round becuse it was so obvious at home an school it was so much quicker he had the above appointments then the ADOS test and was called back a couple weeks later and given the DX now im waiting 6 months later for the final statement so the end (for now) is in sight but a statements a living breathing document iykwim its forever changing alog with your DC so good luck with your DD and your journey together hope its a quick one

Thank you all of you.

I did wonder if I was going mad, but to have almost confirmation from strangers that they too think there are Aspergers traits, makes it a little easier iykwim.

I am going to go to the library and read up as much as I can, get everything written down (so it makes sense!) and get to the doctors this week.

Can I just balance all the negativity by saying she is the most beautiful, clever little girl and although acts older than her years, is a credit to me!

No one doubted for a second that she is wonderful, and that you love her to her bits.

You're not being disloyal to her admitting she has some difficulties...

Seconded.
You are doing what a responsible parent should, considering all the possibilities with an open mind, motivated by love.

It shouldn't be quicker doing it through your GP, they refer you to the same place that the school does. That's kind of by the by though.

The diagnosis process is no different up here really, she'll be assessed by a child development centre or a paediatrician, then they'll see her again six months later and possibly diagnose then, or keep seeing her regularly.

There's no reason at all for the school to wait to offer support though, social skills are something they can and should help her with - with or without a diagnosis, it's supposed to be based purely on need.

Thanks again.

I have made a doctors appointment for next monday morning. I really wanted it to be this week, but our surgery is over-run with locums at the moment, so to get a resident gp meant waiting a bit longer.

Waiting to hear from the school this week with regards to anything they have sorted their end. DD1s teacher was fairly on the ball on friday afternoon and was about to go and talk to the assistant head once DH had left the meeting.

I am very anxious at the moment, and worried, but Im sure everyone here has been there and felt that already!

Just need to get everything down on paper for the appointment next week!

Well.... just had a phone call from DD1s teacher. Having spoken to assistant head and Learning Support Team, they dont think she ticks enough boxes to refer her. They still strongly suggest we go to GP and go down that route though.

I guess this is the start of the fight.... I really did think the school were on the same page as us, but it appears only her actual teacher is on our side!

Teacher did say she was going to try some flash card style prompts on DD1s table at school with things like "raise your hand" and "do you NEED to see the teacher right now?" and "are you SURE you have finished your work" to see if that helps settle her down a little at school with regards to calling out and jumping up from her chair every 2 minutes!

Guess we need to wait and see what happens next monday at the GP.

ASD is a medical condition. School are not qualified to dx her. No idea why they won't refer her - but it doesn't matter. Your GP will.

And of course the converse is also true. The GP knows nothing about the education system and will assume all sorts of untrue things about what school can do for you.

Does you DD get SfL or is it her class teacher's opinion vs teachers who don't actually know her?

It's not up to them to decide whether she ticks enough boxes or not, just whether it's worth referring her or not and to tell you it is worth doing, but they're not willing to is just ludicrous

A GP can refer you to a developmental paediatrician who can make a diagnosis. Easier and quicker than school to do such a thing.

IPSEA have a separate helpline re those in Scotland; their website is www.ipsea.org.uk. I would suggest you contact them asap.