Got Paed appt for March!

[bear73]

After being referred by DD's OT in October I got a letter on Sat asking to phone to make an initial appoitment. I phoned this morning and the earliest appt is 2nd March 09!

She said she would send me some standard questionnaires to complete and Connors questionnaire too.

I am slightly worried by that as her OT said that she thought maybe ADHD but I totally disagree and feel she is more mild aspergers. I have looked up the Connors questionnaire and it seems to be used for ADHD diagnosis. Is this right? Is it helpful in diagnosing anything else?

I knew this would happen. Her OT is lovely but doesn't know dd as well as I do and having done so much reading up since October she has so many aspergers traits. I think because we had so many settling in problems at the start of Year 1 in Sept and that included dd being violent to other kids and never sitting down that the OT went striaght for ADHD. Actually she wasn't violent throughout reception and I think most of the problems were due to change and also an inexperienced teacher who gave her no rules, control or boundaries. Since all this came to light she has calmed down and no more episodes of violence and she is doing great. We have little issues due to her sensory processing disorder and dyspraxia and she can be controlling and obbsessive but not violent or horrid. That was out of character for her.

I feel sick now as I hoped it would not be so centred on ADHD and am worried they will say she is not ADHD and not look into any other avenues. I need to send the questionnaires to school too and then the Paed will assess them before our appt in March.

I don't know what to do now as I have waited so long for a Paed referral and have long thought dd was different. She talked very early and now talks non stop in a very grown up manner, she is so particular and obbessive about things and does have problems with social relationships. She is very bright and in Year 1 is only a couple of levels away from completing all reading levels and going on to free reading.

She does fidget and finds it hard to keep still for long periods if something doesn't interest her but if she is engrossed then she will sit for ages - no problems. She is sensory seeking so she does touch, fidget and annoy. She is also very uncoordinated and hates sport, games, losing, being last etc etc

Any help or advice appreicated. I don't know how to handle the whole Paed appt thing. What will they do on our first appt? She said it would be for me and dd and would last about an hour and a half. Do i get an opporutnity to talk to him without dd? Can i send information that I have being notes on with the questionnaires? I just want to do as much as I can.

Thanks

Dinks
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We have just got dd2's apointment through for the first stage of her ASD asessment, its also in March, we are also waiting for an apointment to see another SALT, we were told it would be pushed through but we have been waiting 2 months. Dd2 saw the paed a few weeks ago for the first time.

From what you have said about your dd she sounds just like my dd1, dd1 spoke very early, talks very grown up, obsesive about routine, has problems with socialising and is way ahead with reading. Dd1 has a dx of Aspergers syndrome, we got her dx a couple weeks ago 2 years after we firsT saw a paed.

On dd's first apointment the paed just played a few games with dd, asked her to do simple tasks and puzzles, dd enjoyed the whole thing and didn't want to go back home. If it helps write a list of your concerns for dd so you don't miss anything out whilst talking to the paed.

I don't know alot about ADHD but i would say it sounds more like Aspergers.

Good luck, i hope you get some answers soon.

Thank you for your message. I am convinced it is Aspergers but just have this awful feeling I am going to be fobbed off, I don't know why.

Hopefully I can put my concerns via the questionnaires and also include information I feel is relevent so dr can see all the info before we meet. I am just worried she will be fine at the appt and they will see nothing wrong. She is usually fairly shy with new people and won't have her usual reactions.

It's a shame its so far ahead as now I have 2 months of worrying about it!

I just want to make sure I do right by her.

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Don't worry too much about the Conners rating, just fill it in honestly and send it back. It is a useful tool but will not on its own lead to a dx. The behaviours you describe are certainly consistant with a dx of AS and a decent paediatrician will recognise that.

I think ds first paed meeting lasted about 1 hour but I can't remember now. With us the paed chatted to ds for a couple of minutes and then settled him down to play with some toys while he talked to me.

I find it helpful to take a list of things I want to say in the meeting as i am bound to forget something otherwise. Write down all the behaviours you have concerns about and try to include examples if you can.

What is the other questionaire?

My dd1 is also very shy, i had the same worries as you (i thought dd would be fine at the apointment) but once dd1 came out of herself they noticed the way she spoke (like an adult) and the way she has to take the lead in conversation. They might also arange to see her at home (they did this with dd1).

You are lucky to get an apointment so soon, even though 2 months seems along way away, we had to wait 4 months to see a paed with both dd's, our next apointment with the paed is in August .

Not sure what the other questionnaire is, she just said they would send out some standard questionnaires and the also the connors questionnaire.

I hope there is somewhere I can put all of the info I have been compiling. I really what them to have aspergers in their mind when we go for the appt. I just did the australian aspergers scale test online and she scored high on most of the answers but they aren't sending me that one.

The more I think about it the more i feel the pressure to fill it in just right, not to forget anything and to do right by her. I am paranoid of forgetting something important and letting her down.

I doubt she will just play while I talk to the Paed, i hate talking about her when she is within earshot. She takes in everything you say even when you think she isn't listening.

We were referred in Oct so by the time we are seen it will have been nearly 6 months, not great but she did say if anything came up sooner she would call me.

God I hope he is a good Paed, really i do. If he does suspect aspergers will he say so or just give me more questionnaires to complete? Should I actually say i suspect aspergers, i don't want to tell them their job or put ideas in their heads.

dinks
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I wouldn't worry; first time we saw a Paed he said he had guessed adhd from notes (similar to your dd) but t clearly wouldnt

also.... dont be expecting answers for a while. ds1 (as / hfa) took 2 years, ds3 got his dx today after 2.5 years (ASD)

Thanks for the reply. I suspected it may take a while for a dx.

Out of interest what would be the process if the Paed did suspect aspergers? We would see him for the initial appt and then I suppose more appts, more observing? Are they likely to send me to another organissation?

One thing that concerns me is that the reason we were reffered was because of her becoming aggressive at the start of year 1 and very difficult to control. Since myself and her OT got involved in Oct she has calmed down, we have a behaviour plan in place that has worked a treat and we have little or no problems at sch now. Will that affect the Paed's view, that things are OK at sch now. Obviously there is a lot in place at sch to help her but take that away and you have a very different story.

She seems so normal to me at times that I worry she will seem so normal to them. How she reacts will depend on her mood and how comfortable she feels with that person. I suspect you have all been here before too I just hope to god we have a good Paed that listens. I certainly plan to include lots of info with my questionnaires.

thanks
dinks
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if things are ok at school she / he will look at triggers, solutions that worked perhaps

timescales are hard and dx procedures vary reginally; at the least i'd expect to see a SALT, OT, maybe PT, ed psych- sometimes thats done in one clinic, if you're lucky: separate lists here.

We had to see SALT, OT and Psych before we got a dx, we had to wait around 4-5 months between each one ,then you sit down with all of them to discus a dx.

My dd1 seems normal most of the time, she can be oversensitive and likes to be in charge. Shes also doing well at school but shes too young to realy notice that she is struggling with the social side as she is happy to play on her own.

Today at the teacher and some other kids had spent 30 minutes putting the xmas cards from the school post box in year piles to hand out and after lunch dd helps a bit then throws them on the floor and starts to kick them around! The teacher and some kids stayed in at lunch play to do the whole job over again.

No idea why, can't explain herslef. Had to sit on her spot for a few minutes and was really crying. The teacher said they had a chat about it and dd couldn't explain why she did it. She couldn't tell me why either. She was very upset and didn't want the other kids to know she was crying because then they would know what she had done.

She was also upset that it was going in her home contact book and I would find out.

Apart from that she had a good day. Why does she do these weird random things that she can't explain?

Not being able to explain things like this is often part of the condition; AS people don't always have the insight to explain their actions, or the lexicon to describe it (semantic pragmatics often are relevant here). DS1 can very rarely explain things to us even at 9, identifying emotions / triggers etc is complex for him- and verbalising them more so.

Christmas is a very challenging time for many spectrum people, I've learned to expect far more incidents in the run up. For some these are very blatant 'meltdown' type behaviours: with mine, ds1 just escalates his normal sevre behavioural problems, and ds3 will lose continence / suffer minor regressions.

Thanks Peachy. That is interesting as most things that happen at school she has no explanation for and that is so frustrating.

At the start of term when she was being aggressive the teacher said she would hit children totally unprovoked and I have never known her to do this. Apart from one incident in nursery she has never hurt a child before now. Usually there is a reason, albeit a strange one but sometimes there is just no explanation at all.

She was shouting out a lot at carpet time too. Somtimes answers but sometimes random things like "I am hungry" or "I need the toilet" or "I am playing with my ball". She always got in trouble if she didn't stop but kept doing it time after time. When I asked her why she did it or why she just didn't stop she said "I don't know why, I just do it". It's hard to help someone when you have no idea why they are doing things.

dinks

Carpet time- again amassive problem for loads of spectrum kids!

Can I ask waht they're doing to prevent this at school? Usual punishments / behavioural techniques often fail abysmally: reward charts are often a complete joke with asd children.

What is the SENCO like? Has she fed into any possible techniques? We've had stunning and terrible ones- they vary hugely.

Have you looked at the national autistic society website? You don't need a diagnosis to search for ideas and lets face it, if it works it doesn't matter where it came from does it?

Yes, carpet and circle times are usually a problem. They have a behaviour plan which involves three places. If she is asked to stop doing something and carries on she goes and sits on her spot for 5 mins, if she continues to misbehave she sits outside the classroom for 5 mins and if she still continues she goes to Headmasters office.

Using this strategy has pretty much eliminated a lot of the agressive and disruptive behaviour from the start of term. She only ever had to sit outside a couple of times and has never gone to the 3rd place. She still sits on her spot in class occasionally but it's only once a week or so for minor things like above.

The SENCO changed this term and she is the yesr 5 teacher. She seems OK and was quite hands on when dd was real trouble at the start of term. They were very close to calling in the Ed Psych.

I got the questionnaires through from the Paed today and it's connors questionnaires for me and for school and just one piece of paper asking what are concerns are, medical history etc. This is because the OT suggested ADHD and I have to say I don't agree. Looks like they have just sent questionnaires for this.

I will just have to write down all my own info and send it. I hope they read it and take note because if we are just relying on an ADHD questionnaire then we won't get very far.

Her teacher thinks her behaviour is fine now so will rpobably just write that down and they will think nothing is wrong.

dinks
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Put all your info in a lettr- i always do when contacting (for eg) the LEA and they do always read it. They want a correct dx after all.

Ask the teacher writing the report t details strategies that have worked and suchlike, a good Paed gets useful clues from that

Thanks peachy. I suppose i have concerns because I know the Paed has been told possible ADHD and then will probably get a questionnaire back which is not indicative of that at all.

I am going to attach a letter with a report of all of the things that DO concern me.

I have been told by a friends that the Paed we have sometimes isn't great so will just have to hope that he does well for us.

I will also have to work on the teacher and try to get her to do more than just complete the questionnaire. They say to base it on the last month but that has been fine at sch. If they has said fill it out for september then that would've been a whole different story!

dinks

Paeds are just one part of it- SALt, OT etc all matter equally.

I really wouldn't stress too much about the ADHD thing- DS3 was obvious ASD in that he regressed, has a sibling diagnosed oon the spectrum- but it still took them a few years because they want to make 100% certain they are right with the DX. They will also ask your opinion about any possible diagnosis.

Hi thanks peachy.

We already see the OT there and she was the one who suggestd ADHD, I actually asked her if she though there could be any other issues and she said no.

SALT is speech and language isn't it? Do you only see a SALT if there are problems with speech and language? DD's is fine, infact above average for her age. Do they SALT see them to establish that it is in fact well above her age or do you only see SALT if there are problems?

I am trying to put it all to the back of mind until after christmas now. DD was ok last couple of days at school. The only thing she did today was draw on someone elses work and she sat on her spot for 5 mins for that. She did that twice in one day last week too. Drew and scribbled on 2 girls work, no idea why. Although today the teacher wrote that she did it to get the other girls attention. I keep telling dd to use her mouth and speak words but she often says she did and they ignored her or she was too impatient to wait!

dinks
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SALT is usually part of the assessment required for spectrum disorders- triad of impairments with / without language difficulties is the difference between AS ad ASD

Thanks peachy. Yesterday someone did something funny in the street and she just looked at me and said "that's very bizarre behaviour isn't it mummy". She's only 5, almost made me laugh.

I don't even say "bizarre"!

dinks
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Dd had to see SALT even though her speech is perfect, she comes out with long words which i wouldn't have thought she knew. Dd scored way above average for he SALT assesment but they said they way she speeks (like an adult and always in control of the convasation) indicates she has AS.

DS1 scored 10 yars ahead of his age- and that was the maz assessable (adult).

but he does have that fixed, literal and SPD speech.

Actually I need to request SALT as he is going backwards lately- mumbles loads, but I'ver ewuested an emergency statement review anyhow so can deasl with it then

That's interesting about SALT. I would actually be very interested to see what they thought of her speech. She spoke very early could say "Bye Bye. Take Care" aged 10 months! She speaking sentences aged 15 months.

She went to play at a girls house last week for the first time and when I picked her up her mum said she had been fine and was amazed at her speech, very grown up and totally different from how her daughter speaks. I was surprised as another parent has never commented on her speech like that before.

She also said she felt my dd had a very "male" way of thinking. No idea what that is meant to mean. But she has an older son and a daughter my dd's age and she felt she was like her son in the way she thought and reacted. Very literal and everything is black or white - no compromise. No idea why that is more "male" though?

I suppose now I just have to hope the Paed agrees with me and sends us for SALT assessment too.

dinks
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