Am I starting at the right place with first appt?

[llisa32]

Hi....just need some re-assurance pls:)

 

I've got my appt through now for initial appt with a 'specialist' re J and suspected aspergers..

 

I've looked the doc up and she is a child psych working with Cams team...I just wanted to know what you guys

thought of this? - is she the right starting point? - What should I be 'aware' of for the intial appt??

 

Thanks in advance

[brooke]

when i was first concerned about my son he was refferd to his peadiatricion. But he then had to see speech therapists, senco, and lots of other proffesionals before he was diagnosed. How did you get the referrel mine was through the health visitor but then school referred him after that.

Brooke

[llisa32]

Hiya, I went to our GP with a list of what I thought to be 'different' behaviours, I also had a report from the school learning support unit that was done when he was 5.7 yrs old and that outlined the differences between his verbal and visual perception etc, IQ, reading difficulties etc. J is now 7.8 yrs old

Do you think I'm not seeing the right person?

 

Cheers

Lisa

[Flora]

llisa if you've been referred to CAMHS then it's the right place. Is it a child psychologist or psychiatrist you are seeing?

 

My sons were referred to CAMHS to a consultant child psychiatrist who then involved a clinical psychologist as part of the assessment process.

 

It sounds from what you've said that you have been referred to the right person.

 

Flora

[llisa32]

Hiya - It's a child psychiatrist, so hopefully it's a good starting point.

 

I've been keeping a sporadic diary for last couple of months so will be taking that with me

[cmuir]

Hi

 

In advance of the appointment, I'd write/type a couple of pages (like a bullet-pointed list) outlining why you think your child may have an ASD or giving examples of behaviours which one wouldn't expect of an NT child, eg age 2 child was lining up toys, watching same DVD over and over again, poor eye contact, disliking changes in routine etc (give specific examples). I think that bullet-pointed note should be helpful to a specialist because they'll probably ask you all these things anyway and these specialists don't often have a great deal of time to read screads and screads. Often these appointments are few and far between which is another reason why it's helpful and saves going over old ground again and again.

 

We first saw a community paediatrician, whom I have to say was useless. We eventually saw a specialist in ASDs at a communication clinic and she was fantastic. We're now seeing someone from CAMHS and I'm afraid I'm not impressed at all. Everyone's experiences are different, so just take things as they come. Be careful not to let a specialist put words in your words or disregard what you say. Be focused and make your point. Unfortunately, I've came across some very 'difficult' people who've been too quick to say 'nothing's wrong' before finally seeing someone who really knew what they were talking about - hopefully the person you see will be one of those!

 

Best wishes

 

Caroline

[brooke]

Sorry i didnt mean to confuse you, Im sure you will be seeing the right person I was just explaining what happened with my son but i think its different with each case. In mine the school helped enormously, as when he was first referred they told me there was nothing wrong

Anyway sorry again for the misunderstanding

Brooke

[llisa32]

No problem Brooke - I have the opposite problem in that school see no issue with J's 'little eccentricities' as they call them and imply I don't know what I'm talking about and that J is still young and will grow out of it!

 

Probably the reason why I'm worried about the appts etc, cos I've read loads of these threads and it does seem to help if you have the school backing you up. My son absolutely believes in school rules and hence they see a 'model' pupil and therefore the rest is of no consequence to them at the mo.

 

This is despite them knowing that I had to move him from his first primary school as he absolutely freaked out every morning and would run off or be handed over kicking and screaming and absolutely sobbing his heart out - this went on for 8 weeks. At the time I just thought it was the change from nursery to 'big' school, then I thought maybe he just could not handle the size of the class and general environment. he's at much smaller school now with classes half the size and he settled in within 1 week! (when he started school I didn't know anything about ASD's - just knew he was showing some 'autistic' traits.

[brooke]

Yes i feel very lucky in that my sons school picked up on it straight away i think they prob new what it was before me. There seems to be so many on here that have schools that dont understand it must be so difficult for you:tearful: I think unless your with them 24hrs they dont see it. Even some of my family would say to me "oh hes fine" but that just made me feel like i must be a rubbish mum.

I hope it goes well for you and just tell them everything you know as i used to try and say all the positive stuff (not liking to admit how hard it could be) and that just gives them a reason to brush you off iyswim.

Brooke

[JsMum]

I have a word of caution with CAHMS because they diagnosed J with ADHD/ODD, at age 7 yrs, they had totally missed the social interaction and social issues and only when he went on treatment did the new areas doctor have concerns of Autistic Spectrum and then Js peadatrition when he had a spell in hospital with palpatations and chest pains, and said that these where a result of anxieties and the cause was An Autstic Spectrum Disorder and referred him to a specialist Autistic centre, however our PCT woulndnt fund it and we are still in discussions but he has recently been seen by another peadatrition who has confirmed ASD so they dont always pick up the sign if they are mixed in with other diagnosed conditions.

 

I would have a reserved attitude and if at any time you feel they are suggesting milder developmental delays you could always request a second opinion because who ever it is that does the assessment needs to be experienced in ASDs, and have a certain level of speciality.

 

I would push for a specialist centre that specialises in ASDs.

 

JsMum

[llisa32]

Hi J's mum, and thanks for the advice. I am going to focus on the social interaction issues (using the last bunch of stunning play dates as examples ...That, and dislike of change, food issues (will for most part only eat 'soft' food or 1 particular brand of food - if it looks slightly diff or smells slightly diff he won't touch it), clothing and bedding must be soft - to cut a long story lots of what I believe are 'sensory' issues.

 

The little 'whizzy' thing he does with his hands and upper body whenever he gets excited or is showing you stuff is going on more and more frequently now - it's hard to explain but like someone saying 'WEEEEEEEEEEEEEEEEEEEEEEEEEE!!! and screwing their hands and eyes up - hopefully that makes some sort of sense

 

He's extemely naive, and is already starting to get bullied at school - something which he doesn't really see - although he's clearly unhappy about it. He's also getting more and more tired from being at school at the moment...he had a paddy tonight whilst I was at work and lashed out at my hubby...he got sent to his room at 5.30pm and promptly put himself under a blanket, grabbed one of his cuddly toys and went to sleep. I had trouble waking him up at 7.30pm, and still needed to coax him out of his bad mood. But knew if I didn't he would be waking us up at 12pm saying he was hungrey etc. Was like a diff child by 8.30pm - and spent 2 hours watching digimon videos and playing with digimon soft toys.

 

He's now asleep again already....but given that we've had trouble at school this week with him being hurt, plus the weathers been warm etc I guess its all got to him.

 

It's so hard being in this stage..I'm really worried about year 3 and how he's going to get on with only having older children above him in school...I guess we're all like a bunch of mummy and daddy tigers when it comes to our kids - I'm in awe of some of you guys and you're all helping me to keep focused on this - thanks <'>