New here!

[dinky73]

Hi

 

I thought I would come and say hi as I am new to this forum. My dd who will be 6 in Feb was diagnosed with Sensory Processing Disorder and Motor Dyspraxia when she was 3 1/2. We have been seeing an OT for sensory integration sessions for a while and in October she referred us to a Paed as my daughter started struggling with her behaviour in school at the start of Year 1.

 

I have been keeping notes for a while as I know she has lots of strange behaviours, is very obsessive and controlling, has difficulties socially, hates change, loves routine, talked very early and speaks very grown up now and is only a couple of levels away from completely all the reading levels at sch. Things have sch are ok now as her new teacher obviously struggled at first which made dd feel out of control. Since a behaviour plan and other measures were put in place she is fine and poses very few problems now (apart from the odd obsessional thing or upset over change).

 

I strongly suspect mild aspergers and we have an initial appt with the Paed on 2nd March next year. I am very concerned as her OT only suggested she thought possible ADHD and that is what has been passed to the Paed (she said this because at the time she was aggresive at sch and would not do as she was told or stay in her chair). We will be getting questionnaires to complete soon and I intend to be very thorough and include lots of information and examples.

 

I feel very apprehensive about the whole thing and am so worried about the appointment. Sometimes dd seems so normal that I worry that they won't see what I see. Coupled with her current problems (SPD and Dyspraxia) and the info from myself and the school I really hope they can see what I see.

 

Hopefully coming here will give me some support and encouragement as I feel I have a very long road ahead of me.

 

Thanks

dinks

x

[Anna Van Der Post]

I strongly suspect mild aspergers and we have an initial appt with the Paed on 2nd March next year. I am very concerned as her OT only suggested she thought possible ADHD and that is what has been passed to the Paed (she said this because at the time she was aggresive at sch and would not do as she was told or stay in her chair). We will be getting questionnaires to complete soon and I intend to be very thorough and include lots of information and examples.

 

I feel very apprehensive about the whole thing and am so worried about the appointment. Sometimes dd seems so normal that I worry that they won't see what I see. Coupled with her current problems (SPD and Dyspraxia) and the info from myself and the school I really hope they can see what I see.

 

Hopefully coming here will give me some support and encouragement as I feel I have a very long road ahead of me.

 

Thanks

dinks

x

 

Hi Dinks,

 

I am new too. In fact I have never been on forums before and don't know what I'm doing!

 

I would certainly write a list of all the traits that indicate Aspergers that you have seen in your daughter with examples and hand it to the paediatrician. If you do not get a diagnosis of Aspergers but still feel that your duaghter might be, I would visit (if you can afford it) a private psychiatrist/paedatrician who specialises in Asporegers (The NAS used to hold a list and may well still do so).

 

Good luck with it all, it is all such a lot of work and can be quite intimidating.

 

Anna

 

( edited to fix quote- K )

Edited December 17, 2008 by Kathryn

[dinky73]

Hi Dinks,

 

I am new too. In fact I have never been on forums before and don't know what I'm doing!

 

I would certainly write a list of all the traits that indicate Aspergers that you have seen in your daughter with examples and hand it to the paediatrician. If you do not get a diagnosis of Aspergers but still feel that your duaghter might be, I would visit (if you can afford it) a private psychiatrist/paedatrician who specialises in Asporegers (The NAS used to hold a list and may well still do so).

 

Good luck with it all, it is all such a lot of work and can be quite intimidating.

 

Anna

 

Hi Anna

 

Thanks for replying. Do you have children with Aspergers?

 

I was told by dd's OT that it would do no good going private as in the end the school would have to work with Paed's working at the children's centre and going elsewhere just confuses the matter. I did go private to get my dd's diagnosis of SPD and then took that to my GP and got OT sessions for my daughter on the NHS. On the first appointment the OT was definitely put out that my daughter has already been assessed and was unable to do her own assessment.

 

I would love to go private and get a diagnosis but I don't know how that works with school and I certainly don't want to get my NHS Paed's back up before we even start.

 

It's all so hard isn't it.

 

dinks

xx

[Anna Van Der Post]

Yes, I have a 15 year old with Aspergers.

 

I had to fight the LEA to accept a private diagnosis but as I had chosen a psychiatrist who had a life times experience in autism and their local paediatrician was not an expert I won. I think is is appaling that we have to accept the state sanctioned (hardly impartial) paediatrician and the diagnosis will only be as good and accurate as the individual who assesses the child. My reason for a private diagnosis was that I felt it gave me some leverage. I don't know what the law is regarding whether they have to accept a private diagnosis or not. It is hard to say in the end whether it helps or not but for me it reassured me that my observations about my child were correct.

 

I'm not being much help really am I?

In the end it is trial and error and what worked for me in my area may or may not work for you, so much is dependent on the area you live.

Keep me posted - I want to know how it all goes!

 

Anna

[dinky73]

Yes, I have a 15 year old with Aspergers.

 

I had to fight the LEA to accept a private diagnosis but as I had chosen a psychiatrist who had a life times experience in autism and their local paediatrician was not an expert I won. I think is is appaling that we have to accept the state sanctioned (hardly impartial) paediatrician and the diagnosis will only be as good and accurate as the individual who assesses the child. My reason for a private diagnosis was that I felt it gave me some leverage. I don't know what the law is regarding whether they have to accept a private diagnosis or not. It is hard to say in the end whether it helps or not but for me it reassured me that my observations about my child were correct.

 

I'm not being much help really am I?

In the end it is trial and error and what worked for me in my area may or may not work for you, so much is dependent on the area you live.

Keep me posted - I want to know how it all goes!

 

Anna

 

I would be interested to know if they have to accept a private diagnosis by law. I would dearly love to get one done but have been put off by her OT. My LEA is Hertfordshire, where are you based? Out of interest how much does is cost to get a private diagnosis?

 

How would I even go about finding someone to assess her. As you say it would need to be someone very experienced to counteract anything the local LEA say against it. Sometimes I don't even know what I am fighting for as even with a diagnosis I am not sure they would change much at school. She is doing great academically and apart from odd incidents things have calmed down a lot. I doubt I would need to fight for extra help for her, she certainly doesn't need it academically. I just want what is best for her and I am told things will get worse for her in school as she gets older and so I want everything in place in case I need it to fight for extra help down the line or even get her into a different school if necessary.

 

I know from the sceretary at the children's centre that they have been flooded with loads of referrals so I doubt they have the time or money to go through each one properly. I don't want to be one of the ones they see and dismiss.

 

In a way I wish I had got the letter after xmas as now I am just worrying about the whole thing.

 

dinks

x

[chris54]

I don't think it would be so much as them accept by law, more to do with who does the diagnosis.

 

We all know that there are doctors etc out there who will say anything for the right fee.

 

If it is done by a reputable person then how can they ignore it. But it might put a few noses out of joint.

 

A friend had a private diagnosis for ASD done for her 3 year old son a few year ago, due to time it was all taking, and moved on positively. It was done by a retired consultant that she got to know about from work contact. It took about 5 hours in total over a few visits and cost I don't know what,(a lot I think).

 

 

[dinky73]

I don't think it would be so much as them accept by law, more to do with who does the diagnosis.

 

We all know that there are doctors etc out there who will say anything for the right fee.

 

If it is done by a reputable person then how can they ignore it. But it might put a few noses out of joint.

 

A friend had a private diagnosis for ASD done for her 3 year old son a few year ago, due to time it was all taking, and moved on positively. It was done by a retired consultant that she got to know about from work contact. It took about 5 hours in total over a few visits and cost I don't know what,(a lot I think).

 

Thanks for the reply. Hopefully I won't need to go down the private route but I will if necessary.

 

My questionnaires came through yesterday and they have only sent a Conners questionnaire for me and for school. I hoped there would be more so I could put down all my concerns but it looks like they are concentrating on ADHD due to what the OT suggested. I will have to send in all my concerns on a seperate sheet of paper and hope they take that into consideration too.

 

dinks

 

[Anna Van Der Post]

Thanks for the reply. Hopefully I won't need to go down the private route but I will if necessary.

 

My questionnaires came through yesterday and they have only sent a Conners questionnaire for me and for school. I hoped there would be more so I could put down all my concerns but it looks like they are concentrating on ADHD due to what the OT suggested. I will have to send in all my concerns on a seperate sheet of paper and hope they take that into consideration too.

 

dinks

 

Hi Dinks,

 

I would ask the NAS for a list of psychiatrists etc willing to give a private diagnosis. I found the professor who diagnosed my son from their list and he was excellent and so knowledgeable. I would definitely log your concerns in writing. If you are not careful they will under or mis diagnose your child (a common problem according to my research).

 

Good luck

 

Anna

[edith simon]

Thanks for the reply. Hopefully I won't need to go down the private route but I will if necessary.

 

My questionnaires came through yesterday and they have only sent a Conners questionnaire for me and for school. I hoped there would be more so I could put down all my concerns but it looks like they are concentrating on ADHD due to what the OT suggested. I will have to send in all my concerns on a seperate sheet of paper and hope they take that into consideration too.

 

dinks

Dear Dinks and others who read this,

My son is 22 and I had to go to psichiatrist to get risperidol.After 4 months arguments /he wanted a dose of 4-6mg/day/me and husband only 1mg/day.

After 4 months "going nowhere" and having done all the bloodtests and EEG he was not willing to give an appointment anymore.I went privately in Hungary where he received the 1mg/day risperidol.

Coming back to England I took my son and consultation papers to GP who said that my son cannot be taken to any other psichiatrist as he belongs to the social service medical team because he has learning disabilities.

I asked refferal to the "normal" adult pshiciatry or whether I can take my son to a private consultant and my GP said noway he can only go where he belongs to LDP medical team.

I think it is a very bad discrimination as when we are not happy with one doctor we have the right to change him or her.

So now I try to investigate what is legal and what is not.

Throughout the 22 year not my son`s disability was the main problem but the fights with proffesinals/headteachers,LEA,consultants,social workers etc/.

However out of the 30-40 people I had to work with there were 3-4 good exports too.

If you know sg or sy I would appreciate your help.

And how well these professionals are paid.............and are not always helpful.

Alll the best every body

bye-bye

Edith