Tired and falling apart

[crazyaboutmoo]

Hello, I have just recieved a diagnosis for my daughter of aspergers, apparently mild asperger?

I've had to pay for this private as I have struggled with the nhs to believe that Im not crackers or over sensitive.

Anyway, tomorrow I am going to confront my daughters pediatrition with the report and I'm really not looking forward to it, Im tired and fed up.

My daughter has a wonderful personality but sometimes everything she does grounds me down and I cant handle it.

I feel so alone with it all, I attend a support group but there are no other mums or dads of a female aspie so her "issues" don't seem to match up with the other kids so to speak and I know I should be grateful that she's not as troubled as some kids on the spectrum but Im just finding it really difficult to locate that grateful side of myself right now

[trekster]

IMHO there is no such thing as mild autism or mild asperger. Your daughter has probably

found ways to compensate for her difficulties so as she 'hides it well' to an extent

only her close relatives will see how she is affected. "mild asperger" basically means

"you were mild on the day that i assessed you".

 

i did put into the autism strategy feedback for diagnosticians to "be discouraged for calling it mild, moderate or severe

autism/aspergers" as it has given my family an excuse to blame me for my behaviour.

 

Have you applied for DLA? http://www.autism.org.uk/en-gb/living-with-autism/benefits-and-community-care/disability-living-allowance.aspx

 

Or Carers Allowance?

http://www.autism.org.uk/living-with-autism/benefits-and-community-care/care-and-benefits-for-parents-and-carers/carers-allowance.aspx

 

Apologies for the information overload and good luck with getting your daughters paediatrician to understand her.

if he doesn't take you seriously then maybe a diary of how much you do for your daughter written out and sent to

him might make him 'take stock'. (hope that's the right saying).

 

Female aspies aren't recognised as well as male aspies in some areas of the UK.

Good luck with finding help and support for your daughter.

[crazyaboutmoo]

Hello thankyou so much for your reponse, to be honest we have had the day from hell!

We've been to see the peditrition today and she has discharged my daughter from her as she says any future help we need now much be through the private consultant as he has diagnosed her so her is responsable for her??

She discharged her without any melotonin so we are about to go on a crash course from hell as she really doesn't cope well without it.

I thought things couldn't get any worse, actually I couldnt have been more wrong

[Karen A]

Hello thankyou so much for your reponse, to be honest we have had the day from hell!

We've been to see the peditrition today and she has discharged my daughter from her as she says any future help we need now much be through the private consultant as he has diagnosed her so her is responsable for her??

She discharged her without any melotonin so we are about to go on a crash course from hell as she really doesn't cope well without it.

I thought things couldn't get any worse, actually I couldnt have been more wrong

 

Hi.That is dreadful. <'>

It may be worth contacting PAL for the paediatrician's NHS trust and considering making a formal complaint.

I am aware that with some cancer medications there have been debates about people not being able to mix private and NHS care.However I have not come across that happening on the Forum before.

Does your daughter obtain any support at school ? SEN provision does not have to be put in place with input from a paediatrician so that might be another avenue worth looking into.

 

Karen.

[coolblue]

That's awful. I'm sure it can't be ethical to discharge a patient on those grounds if the patient relies on the practitioner for medication. I'd get in touch with PALS ASAP and ask their advice.

 

cb

[crazyaboutmoo]

I know that's what I think too, problem is she's still up now and is usually out cold by 7pm, she's sobbing and begging me for a tablet to help her sleep what exactly am I suppose to do about this???

Seems like a total mess and I don't even know were to attempt to start, as for applying for DLA I did in october and they wrote back to me saying they would get back to me in 8 weeks...but then she didnt have a diagnosis so it'll probably get rejected and I'll have to try again....

[dana]

Hi Crazyaboutmoo,

 

<'> ><

Maybe you could ask for another NHS poediatrician for the second opinion? It maybe useful to consult some other private professionals such as SALT or ED for assesment? My son was first assesed by private SALT (speech and language therapist) who worked with the ASD children and put in her extensive report that her opinion is that he is somewhere on the ASD spectrum. Her report (together with ED report, SENCO report) helped when I took it to NHS poediatrician who then dx my son with clear case of ASD. I used the vouchers obtained from charity called CEREBRA which gives free £500 wortf vouchers for SALT assesments. Check their website.

 

You can acctually order melatonin tablets from Kirkman but also through their representative in the uk : Th Nutri Centre tel. 0845 602 6744. We order ensyms and fish oil from them. It is not cheap, but it is better than nothing, especially if melatonin help your daughter with sleep (we also used to order it for ds from the same site).

 

Try to get DLA for your daughter, she doesn't have to have dx for that. NAS and CEREBRA's site will help you with advice how to fill the form in.

 

Good luck.

 

Dana

[Sally44]

Your situation has made me very angry. Along with PALS and a written complaint to the Trust about this Paediatrician, I would go back to your GP and ask him to write a prescription and also to refer you to a developmental paediatrician who has experience of diagnosing AS/ASDs.

I have heard of Local Education Authorities attempting to disregard private diagnosis and the Jim Rose report commissioned by the government highlighted this and said that an LEA must have "sound reasons" to disregard such diagnosis and that it should not be on the basis that the diagnosis was given by someone outside of the LEA.

 

I have never heard of a consultant or GP dismissing someone on those grounds. As you say, what about her medication. I would also recommend you phone the National Autistic Society and get some advice from them too. Also ask them about their Help Programmes for parents of newly diagnosed children and get on the list to be on the mailing list for the next one (these are day seminars).

 

If she is having difficulties in school I presume she does not have a Statement. Parents can ask the LEA to assess for a Statement, you do not need to wait for school.

 

If you are struggling to get the medication to get her to sleep, you could phone the paediatrician that diagnosed and ask them to prescribe some whilst you are sorting it out. I really am shocked that you have been put in this situation by a health care professional.

[Sally44]

Other places that you can get help or advice from are:-

 

Your Local Authority will have a Parent Partnership service. Peoples experiences of them are mixed. But their purpose is to help and support parents of children with SEN, which would include Aspergers. They can come with you to any school meetings and can give you advice and support via the phone or can come to your house.

 

If your daughter is currently in mainstream school, then the school will be responsible for seeking advice from the Educational Psychologist and the Speech Therapist. Have they seen or assessed your daughter yet? Now that you have the diagnosis it would be an idea to arrange a meeting with the school SENCO and someone from the PP to ask school to get advice from these professionals. Is your daughter currently on School Action or School Action Plus? Does she have termly IEPs?

 

The local authority will also have an Autism Advisory Teacher. They can go into school and give advice about how she can be supported.

 

You can phone and speak with the EP, SALT or AOT and discuss your concerns. They maybe prepared to go into school on your request, but they would need to clear it with the school because their time comes out of the school budget. Usually the school refers. But even if they do not go into school you can speak to them on the phone and get their advice. The AOT maybe able to go into school just on the diagnosis, as long as school are okay with that.

 

If you feel that you really are not coping at the moment, then go and see the GP for yourself as well. Things can and do get better but it does usually involve the parent having to dig their heels in, learn about the SEN process and start putting things in writing. As someone else has said in another topic previously "it is the squeaky wheel that gets oiled".

 

I think this is your low point and once you have got some advice and a 'plan of action', that things will start to get better. Do you have a partner and are they supportive.

[Karen A]

Your situation has made me very angry. Along with PALS and a written complaint to the Trust about this Paediatrician, I would go back to your GP and ask him to write a prescription

 

Hi.

I think one of the problems is that melatonin cannot yet be prescribed by a GP.I think it is only available on prescription through a paediatrician or CAMHS.

[Karen A]

If you are struggling to get the medication to get her to sleep, you could phone the paediatrician that diagnosed and ask them to prescribe some whilst you are sorting it out. I really am shocked that you have been put in this situation by a health care professional

 

I think it is a frequent situation in the care of patients with cancer,dementia and some other medical conditions.There are patients all over the country paying huge amounts of money for medication that is available to those who can find the money from somewhere for a private prescription but the NHS or local PCT will not fund treatment.It is currently usually the decision of Nice or the PCT.However as they are both being abolished it will very soon be GPS who decide.A bit off topic I know but I think it will become a very big issue.

 

The idea of GPs asssessing,prescribing and also having resposibility for deciding about costs raises huge alarm bells for me knowing what I know about LAs and SEN provision.

 

There was an article in the paper at the weekend.I will see if I can find a link.

http://www.guardian.co.uk/society/2010/nov/19/doctors-warned-expect-unrest-reforms

 

Karen.

Edited November 23, 2010 by Karen A

[bobbybaggio]

IMHO there is no such thing as mild autism or mild asperger. Your daughter has probably

found ways to compensate for her difficulties so as she 'hides it well' to an extent

only her close relatives will see how she is affected. "mild asperger" basically means

"you were mild on the day that i assessed you".

 

This is so true. No such thing as mild autism or aspergers.

 

I know how frustrated you are with the doctor. I've been going to my doctor for years and they wouldn't listen. I ended going down the private route for diagnosis. Even when I was diagnosed my doctor actually turned to me and said "what do you want me to do about it!". I wish I had your courage to have confronted them earlier.

 

I think you're doing absolutely the right thing so that your daughter can get all the support she needs at an early age- you too.

 

Hope you get the support you need.

[Pippin]

Our son's paed recommended melatonin before it was available at all in this country. She told us to order it from the web. It is still available by this route and we still do that. Also, if you happen to have any friends or relis in the USA, it can be got over the counter there.

[baddad]

Hello, I have just recieved a diagnosis for my daughter of aspergers, apparently mild asperger?

I've had to pay for this private as I have struggled with the nhs to believe that Im not crackers or over sensitive.

Anyway, tomorrow I am going to confront my daughters pediatrition with the report and I'm really not looking forward to it, Im tired and fed up.

My daughter has a wonderful personality but sometimes everything she does grounds me down and I cant handle it.

I feel so alone with it all, I attend a support group but there are no other mums or dads of a female aspie so her "issues" don't seem to match up with the other kids so to speak and I know I should be grateful that she's not as troubled as some kids on the spectrum but Im just finding it really difficult to locate that grateful side of myself right now

 

Hi carazyaboutmoo -

I think the problem here is that there is no such thing as 'mild aspergers'. I don't mean that in the way that trekster has defined it - that there's just 'aspergers and some self taught compensatory skills' - there is, literally, no such thing. I don't agree in any way with the paediatricians reaction to the diagnosis you've obtained privately - whether he/she agrees or disagrees that your daughter is on the spectrum is a moot point as far as responding to her symptoms is concerned - but it is understandable that he/she might feel railroaded, especially if 'confronted', and even more so with a woolly diagnosis from a paid consultant.

 

I've dug out this defintion from a post made back in September (but have not quoted any other aspect of the post because i did not want the OP to be taken out of context):

 

I know the answer according to someone who def knows what he's talking about. I've asked previously because I've been dx'ed both HFA and AS, the reason being that the most appropriate dx for me is HFA as I had speech issues as a child (despite talking early - the words I used just didn't make sense / were made up / were unclear), but more people (supposedly) understand AS so it was thought more helpful for me (I'm not so sure it's more helpful, anyway...).

 

1. There is no such diagnosis as High Functioning Asperger's. Neither the diagnosis or any such condition exist.

 

2. There is a diagnosis of High Functioning Autism. 'High Functioning' in this sense does apply directly to a conception of intelligence, based entirely on a standardised test score. The cut-off is 70, i.e. 2 standard deviations below the mean. This is considered 'average' intelligence. Therefore if an individual is diagnosed with an ASD and has an IQ of 70 or above, they have HFA, if below 70, they have Autism, LFA, Autism with x,y,z named learning difficulties. Functioning, in this sense is not to do with social or daily task functioning.

 

3. If an individual has a diagnosis of Autism and an IQ over 70 and no history of speech delay, the diagnosis is AS (Asperger's Syndrome)

 

4. If an individual has a diagnosis of Autism and an IQ over 70 and a history of speech delay, the diagnosis is HFA (High Functioning Autism)

 

5. Things will be a lot easier with the proposed DSM V move towards a single diagnosis of ASD, provided (in my opinion) that the needs of those on the spectrum are not watered down by the too hasty inclusion of the outer edge.

 

The final reference, to DSM V concerns plans to place all ASD's under the 'autism' umbrella, but this proposal is the subject of significant debate for a variety of reasons. Even allowing for DSM V, though, there is no such diagnosis as 'HF Aspergers' (despite the fact that it is a becoming an increasingly useful 'catch-all' for casual diagnosis).

 

As I've said, I'm not in any way condoning your paediatricians response to the diagnosis - If your daughter has significant issues they should be investigated and help offered, regardless of any 'labels' or professional disagreement over those labels - but I do think you'll have problems getting support (not that there is much anyway) with the private diagnosis you've obtained. In terms of education, many LEA's will not 'recognise' private diagnosis, and in any event for a statement or an action plan they need definitions of support needs rather than clinical labels, and these need to be identified within the evidence presented to them.

 

The whole issue of 'private' consultation is a sticky one - however many 'good' consultants there are who undertake a full appraisal before reaching any conclusions there are those who will make a diagnosis on the basis of a 20-30 minute interview, and even some who feel qualified to offer parents a dx for their child without actually working with the child directly at all. While this situation continues to be allowed to exist there will, naturally, be suspicions regarding private diagnosis.

 

Whatever your daughter's circumstances I hope you can get some helpful input soon, from someone who looks at the issues rather than for a label to apply to those issues. If the label you have been offered privately is inappropriate (and certainly the 'mild' tacked on the front of AS does seem a reason for concern) I hope something more appropriate is identified soon, because it could be that the help your daughter does need demand different responses to the ones the dx attracts.

 

L&P

 

BD

[Chloes mum]

Hi

I have a 7 year old daughter diagnosed with Aspergers and ADHD. I too went down the private route for her AS diagnosis as it was taking too long via the NHS (it would've been 2012 before they could've assessed her through the nhs). Our paediatrican accepted the report no problem, as did the LEA, and it has resulted in a lot of extra help for Chloe, so it was well worth doing. Your paediatrician should not have discharged your daughter - she is entitled to NHS services!!!

 

With regard to Melatonin, it can be prescribed by GPs in some areas as it is classified as an amber drug in some areas now, as opposed to a red drug. This basically means that it has to be initiated by a specialist but then it can be passed over to your GP to prescibe under a 'shared-care protocol' Check if this is the case in your area ( I am in East Yorkshire and we now get Melatonin from our GP)

 

I know it feels like a constant battle sometimes, but keep fighting. It will be worth it in the end - and you should definitely contact PALS. You have been treated really badly and your daughters Melatonin should not have been stopped abruptly because of 'politics' as to whose care she should be under.

 

Good luck x

[crazyaboutmoo]

Thankyou everyone for the replies!

My daughter's melotonin has now been prescribed by a very nice GP, he has also listened to my concerns I had with it and suggested another form of melotonin which is slow release, my little girl is delighted as it's a smaller tablet.

 

As for the diagnosis it definatly took alot longer than 20minutes, she had to visit the consultant (who also happens to be the autistic expert for working age adults for the nhs locally but is also trained by NAS for all age groups) four times which lasted approx 1 1/2 hours per session. He also consulted me and my husband on one session without her for the DISCO.

 

The peditrition who was involved was my daughter who felt that she was autistic but that we may have to wait a few years before she would meet the criteria properly.... as for the current school, her teacher has recently told her that she doesn't need to see doctors or have tablets anyway very helpful THANKYOU. So I've had to phone the school and explain I don't appreciate comments like that being said to her, and that is the teacher qualified to make this opinion?? I think a consultant, a peditrition, a GP and the fact her mum (yes me is a nurse) should be qualified to make this decision

To be fair Im so very fed up and tired of fighting and I'm totally losing the will to fight any longer, problem is every time my daughter tells me she is struggling I feel powerless!