Once you get a diagnosis ...

[cmuir]

Hi

 

I'm currently still battling to get a diagnosis for my 4.5 year old son. Things have really started moving after me writing lots and letters and making lots on phonecalls, in terms of appointments. My son had an assessment on Tuesday last week and I have been asked to attend a meeting by the consultant this coming Friday. I believe we will be finally given a diagnosis (forgive me if I don't sound convincing ? although I'm trying to be optimisitic!).

 

I've been under the illusion (rightly or wrongly?) that there are services which become accessible/available once a diagnosis is given. i'm assuming that some of those vary from area to area. Can anyone advise generally what services become available? To those in Edinburgh, I'd be grateful for more specific information. Does your child's consultant organise access to those services automatically, is it something that we have to find out for ourselves, or what?

 

Many thanks.

 

Caroline.

[Flora]

Hi cmuir, it does vary from county to county. I don't know anything about the services in Edinburgh. We lived in Newcastle when my sons had their dx and nothing really momentous happened. The consultant had a meeting with the school and there were a few adjustments made to the way people dealt with them, particularly William and school. William was lucky enough to be enrolled on to a social language course with SALT. All in all I think it was quite good. Then we moved down to Oxfordshire and got zilch from anywhere. I had both boys referred to CAMHS (as our consultant in Newcastle advised), waited nearly a year for the appointments, and then was basically asked 'why are you here?'. It took William having, what can only be described as, a nervous break down last year for anything else to happen. Now we have OT, CAMHS suppurt, autism outreach support at school, all sorts.

 

Basically, everyone has a different experience and it does vary enormously from county to county.

 

Make a list of all your questions before your appointment, take them with you. You might think all the questions are in your head but it is amazing how blank your mind becomes during these meetings and you'll be kicking yourself when you get home thinking of all the things you should have asked.

 

Good luck for Friday. Let us know how you get on.

 

Lauren

[witsend]

Hi Cmuir and good luck for friday. I think things do vary a lot depending on where youy live, when we got diagnosis absolutely nothing happened at the time I was so releived to get it I didn't notice. but since then it has made a differance re statement banding and schools attitude etc also last time we saw consultant he actually started talking about various groups courses that may be of help. Maybe he thought we had to have time foir the news to sink in or maybe they just work at a slow pace i don't know.

Like Lauren said it is a good idea to make a list of things you want to know before you leave because even if you're ready for and expecting dx, when it comes it can sideline you a bit and it's only afterwards you think 'Oh, I meant to ask that and that..'

Take Care

Luv Witsend.

[neda]

Hi Caroline, don't know specifics about Edinburgh as I'm from Glasgow but I can let you know how things are for my boy.

 

My wee boy is 4 as well and I've just had assessment appointment. He hasn't been diagnosed yet but I deferred him from school this year and he has been accepted at a pre-school assessment and development unit, they will work with him on his communication difficulties as well as his emotional, social and behavioural problems and when it comes to him transferring onto school next year, they will be involved in this as well to ensure school is aware of his difficulties and how to get the best from him. This will run in tandem with his other nursery placement as well. As result of psychologist report he now has IEP set up in nursery and has visual aids as well as support from LSA. I have also been working with a behaviour management social worker who has been fantastic. It has taken us 2 months to get to a stage where I could implement something that he understood the concept of it. He now gets grounded for a few minutes wherever we are, if he is outside he gets brought in, if we are in he is grounded to the couch or his room and if we are out shopping etc he gets held next to me for a few minutes, and I can say this is the first time I feel that it is positive.

 

Maybe it depends on your local authority and the types of services you are looking for, but even if he doesn't get an ASD diagnosis, he will obviously still need some sort of support. Maybe you should look at what is available in your area, speak to EP and nursery, as everything I've got for ds has came through them. Sorry I can't help more.

[LizK]

What is available varies from area to area and also on the quality of the HCPs you are dealing with in how good they are at coordinating services or even being aware of them.

 

Where I live (Leicestershire) they try to offer services for preschoolers based upon the child's need rather than diagnosis. This does work but only to a point. Before diagnosis we had speech therapy and had been refereed to OT. We had weekly home visits from a preschool teacher from the Early Years Inclusion Service. He had three hours additional funded help a day at nursery was treated like a child with ASD with visual timetables etc. We were awarded middle rate DLA. None of that changed with diagnosis.

 

However as my son was approaching school age it became evident he would get more help if he had a diagnosis and we pushed for it then getting it just after his 4th birthday. The main thing that we were able to access was Earlybird parenting course and we've just finished that, it was very helpful. The preschool teacher decided it would be worth applying for a statement as we would be in a stronger position with a diagnosis and we are currently awaiting the outcome of that. My son will have access to Autistic Outreach now he's at school and also to their (very limited) home behavioural project. Getting help with behavioural issues was a real nightmare before diagnosis and we were just adivsed to go to general parenting classes or use stadnard aprenting strategies which weren't appropriate but now we've had some advice about how to deal with behaviours specific to a child with ASD which has been a help too.

 

Hopefully you will get a diagnosis very soon but if not make a list of your son's areas of need and get your paediatrician to address these. Might be worth while doing anyway. Is he at school yet? Is he likely to have special educational needs when he starts? If so get referred to which ever service manages this locally as it does take a lot of time to set things up, you shouldn't need a diagnosis to access this

 

HTH

 

Lx