2007 challenge: get a diagnosis for my DD1

Sister_3

Hi Annie,

My DS has AS and was finally diagnosed when he was nearly 15 despite concerns first being raised when he was 3.

I completely sympathise with your desire to have a diagnosis - to me it was a huge relief and I felt justified to stand up and fight for him in many situations in which I would previously have been apologising! It has also helped him to understand why he feels so out of step with everyone around him.

I find your DD's schools comments a little strange TBH. Surely an accurate diagnosis would throw further light on her particular issues and help everyone concerned with her to meet her needs more appropriately?

In your situation I would be insisting on a referral. In our case we were referred to CAMHS and my son was assessed by a psychologist, an ed psych and a speech therapist.

My main advice would be to read up as much as possible around the areas you think are an issue. We saw CAMHS 3 times over the years and it was only when I went back with a 3 page dossier of specifics about DS's behaviour that I finally felt we were taken seriously.

Good luck,
Helen.

Nicki

I think your teacher is wrong about how much extra help your child will get if she gets a diagnosis, and I say this as SEN governor of a mainstream school in England! If your child gets a statement, specifying particular provision - eg a certain number of hours 1:1 support, speech therapy, or other interventions, then the school will have a legal duty to provide this, which you can enforce, through the courts if necessary if they do not. The statement will put your daughter in a band, and depending on what band this is, the school will get an amount of money to fund this provision. The money isn't ringfenced, so you can't require the school to account for the money spent, or make them spend all of the money on your child, but if they don't provide the support they are required to in Part 3 of the statement, you can act.

Also a diagnosis is often a passport to other kinds of support, educational, practical and financial, depending on the needs of your child, so it is worth pursuing. If your child were to qualify for DLA for example, then you could put this money towards buying in extra tuition for her privately if she needs it, or other therapies. We part funded occupational therapy for our DD for a few years from these funds until we were able to get it put on her statement.

AnnieH

Thanks guys. My HV did tell me that of school are reluctant to do anything that I could contact the parent partnership who will fight my corner for me. I might contact them and see what they say about it. I certainly didn't feel fobbed off by the teacher, but maybe it's worth double checking if I have been or not:)

Savvy_Sue

Sister wrote:

It has also helped him to understand why he feels so out of step with everyone around him.

I think that's very important as they grow older, isn't it? I know when DS1 was first diagnosed, a friend asked what Asperger's was, and then said "Oh, I'm one of them then." And I had to agree he was! His view was that as a teenager, he was very unhappy for a while when he TRIED to fit in and be like everyone else. Once he realised that he COULDN'T be like everyone else and stopped trying, he was much happier.

I count us very fortunate that DS1 has always been very happy to be a non-conformist. If he wasn't happy with that, there are strategies which can be used.

BTW, what others have said strengthens my niggling doubt about the school's motives. Some parents look at the stats on a school and think that if too many pupils are statemented, then their own child may be at a disadvantage. I think some parents assume that statementing is ONLY used for poor behaviour, which is obviously tosh. But schools are aware of this so 'worry' about having too many statemented children.

I look at the stats on a school, and think that if lots of children are statemented, the school is doing its best to meet the needs of every individual child. You can never know WHY a large number of children at a particular school are statemented: their needs may be physical, mental, behavioural or a combination of all three.

There are arguments against 'labelling' children too young, and a school may be doing well by a child without statementing, but now's a good time to get things moving: you've got a couple of years before the all-important transfer to secondary school, when a statement could make a huge difference!

cookie54

All i can say is that you need to be prepeared to fight for any thing. our son is statement for 10 hours under the old way but we keep getting told that under the new way unless they need 15 hours w week or more 1.1 care than its up to the school to sort out. The only way we got our son help was to have the lea refuse to refer him and appeal with a private E P and then we won but we are still fighting for the rest of it and have waited FOR 18 MONTHS for CAMH SO GOOD LUCK AND JUST KEEP pushing

Ellie2758

As others have said, you will have to fight for each and every bit of help you and DD need. Dont be fobbed off by any health professional who is not experienced in the autism field. We originally saw a paediatrician when my DD was 3, he dismissed all ideas of autism. She was later diagnosed by a specialist team and then referred to CAHMS. However, CAHMS are very over-stretched in our area. She is now with adult "services" - what a joke!

It will make a huge difference to get a diagnosis - not least for you and for her. For a start, all those people who have been treating you as if you are a cr** parent will have to go take a running jump. As will those who think she is just a badly behaved child. It should mean extra help at school and from NHS services such as speech therapy (oh, ha ha - let's not kid ourselves as this is very under-resourced), physiotherapy, occupational therapy etc. It should also mean that, depending upon how much help you have to give DD with aspects of daily living, she may qualify for DLA and you may qualify for Carers' Allowance.

I cant think of a single reason NOT to get a diagnosis. It is most important for the future that you do.

Best of luck!

DebtphobicDeirdre

My son has severe dyspraxia which can border on high functioning autism and ADHD. My route to help began with a speech therapist when he failed the developmental assessment at two years old who immediately noticed that he had more than simple speech delay.

AnnieH

Thank you all for your replies. It so reassuring to know I'm not the only one out there

I have received a letter from DD's teacher - and it is fab. It outlines her problems, although her teacher did say it's not extensive. Hopefully, with that and the HV's input, I should be able to at least get listened to on Monday.
I'll keep you all posted. Keep your fingers crossed for me:)

AnnieH

Hello, I had my appt this am, with the dr about my DD. I took in a letter from her teacher, and wrote a few things down myself of what she does, and i think the HV had seen him beforehand as well.
He took one look at the letters I took in, and said"Well it looks like Asperger's to me - I'll refer her to the community paediatrician". So I feel like a huge weight has been lifted off my shoulders. I've waited so long for someone to tell me I am not mad - I haven't got Munchausens LOL and there is something abut my daughter tha makes her different. Nobody has ever said before that they think I am right, or wrong,just that DD has problems,or that she is just her. so this is a huge relief to me

Thanks for all the support

Oh and her teacher said that she has arranged have some EP time to talk about Heidi in May!

Savvy_Sue

Great news Annie! I know with DS1 that he was never 'odd' enough for me to march down to GP and refuse to move until he told me what was 'wrong', but it was still a HUGE relief when the school doc guided me to ask her if it might be Asperger's, and she said yes ...

Now, your next challenge, get some specific appropriate help for dealing with the diagnosis ... :rotfl: Good luck!