Asperger's and anorexia

My daughter (25) is in a similar situation and has had severe Anorexia Nervosa for 3 years now and is getting worse( she has a BMI under 13 I think, she won't let me near her weight). She had a very difficult adolescence with no friends, severe social anxiety, panic attacks, hypochondria and many more obsessions. Even though I took her to the Dr on many occasions she was not diagnosed with an ASD (Aspergers and ADHD) until 18 months ago. Although it explains a lot, it has made little difference to her treatment (which consists of 1 therapy session a week - which she doesn't always make and she will only do with me). The only difference seems to be that they are not threatening giving up treatment anymore because she s not engaging and are also no longer threatening inpatient as some Dr has said it will be ineffective which I agree with as the inpatient facilities just do not cater for ASD patients.

My daughter has regular meltdowns, is virtually house bound, constantly and obsessively cleans the house etc etc. her life is barely worth living and as a result nor is mine or my son's.

If anyone has any advice I would be really grateful as we are desperate.

Also my daughter is diagnosed with Asperger's, along side, anxiety disorders, depression and selective mutism..with anorexia on top of all this it makes her life very difficult. 

Thank you Daisygirl that is all great advice...I'm sorry that you are having trouble with the NHs aswell, it does seem that that mental health is seen as less important than physical health and is also less funded. I will look into a hospital autism passport and find out about the autism training of staff involved, you have given me some fab ideas for moving forward :-)

Is your daughter diagnosed with Asperger's?

If she is then all treatments pans for her anorexia MUST take this into consideration. There has been a lot of research and anorexia and autism goes together a lot (me and a lot if other Aspie girls have Eating disorders, anorexia being (I think) most common).

Get a written treatment plan for your daughter, ensure that this takes her autism into account at all times. Make sure that all those people treating her have proper autism awareness training. Start to get the Health Board (that's what they are called in Scotland, not sure what they are elsewhere) involved, write and ask what treatment will be offerred and how her autism will be taken into account. A lot of people think Asperger's is mild autism, but it can often be quite severe autistic traits, just with an above average intelligence that masks it.

Get everything in writing, if you go to meetings then you are in your rights as your daughter's guardian to covertly record the meeting on a digital recorder.

Get the actual names of any doctors, nurses etc. who will be involved in the treatment plan and actually ask them what their autism training is. Check out the GMC website the part about "Good Medical Practice" this makes it clear that doctors must be qualified to treat your daughter, and must take all her needs into account before commencing treatment.

Ask to see what the autism training they have undergone  involves, hopefully not just a couple of seminars. Does your daughter have the Hospital Autism Passport attached to her notes? Make sure this happens.

Try and find local autism groups or any funded locally that might be able to help you. The NAS does not help individuals, I have tried to get them to help with my BIG problems with the NHS and I just hang on the helpline for half an hour and then get cut off, I tried the online form but it took weeks for a reply to come and it didn't even respond to what was in the e-mail but went on about social care. Try your MP if you cannot get information in writing, or if there are any delays in getting information and appropriate treatment. Always go to the top as soon as you can't get the information or treatment you want and need, don't delay with managers or doctors not getting their act together.

I know this is a very scary time, and it things might have to happen quickly, but unless the people treating your daughter know how to alter therapies to account for autism they will find it very difficult to help her.

I hope that you can get the best autism centred care for your daughter. Very best wishes.

SOI's post is really interesting. I have been interested in dietary links to autism and have found that I react to some foods.

Has D been allergy tested for food allergies and intolerances?

You could try this charity http://treatingautism.co.uk who advise on biomedical/nutritional issues, or may know of sympathetic doctors who could help. 

I came close to being sectioned for so-called anorexia many years ago, when I realised certain foods were having weird effects and pretty much stopped eating. Won't elaborate as I don't want to indentify myself, but fortunately as an adult I was able to walk away from the medics, and dig myself out of the hole with the help of an amazingly unflappable acupuncturist, and several serendipitous charity-shop book finds about nutrition and mental health. 

It is critical then that the hospital that she might go to must fully understand autism. Do you have any details about this place and what it specialises in and how they can help autistic people? Have you considered visiting it first, yourself, to see what it is like? They might be able to reassure you (or not?) about how they would go about treating her illness. Do they have any beds for parents/carers to stay in whilst she is being treated? If the treatment is to continue at home, after her stay, then you might benefit from seeing how they do it.

Understandably my d is terrified of being somewhere far from her home...she will be unable to communicate how she is feeling as she will not be able to speak, and I will be worried that this will be seen as non compliance, also there are many foods she cannot eat due to her autism because of the texture, colour etc and this was present before she was anorexic, and again I'm worried that this will not be taken into account. I feel I am in an awful situation of wanting to help and protect my d but also knowing that she needs intensive help if she is ever to get this insidious disease under control :-(

It sounds as though her care is joined up properly :-)

The care team won't be recommending this lightly, they will be aware of the potential impact and risks of both courses of action. Are they worried that the progress that she is making now isn't fast enough?

What does your daughter have to say about this? Presumably she is anxious and frightened about anything different to what she knows?

the psychologist is seperate but works alongside her mental health team who got her involved. I understand England isn't terrible but, she would be a long way from home and I cannot afford to travel or stay there for prolonged periods of time and that's what worries me. The logistics are difficult and I want her to feel safe, and to have the best care possible. Wales is struggling but that shouldn't mean that I give up and stop fighting for the help she needs here. It's a very worrying time and I hope there is some middle ground that can be met with her care team :-)

Is the psychologist separate to the team that want to take her to England? Does the psych have real expertese in autism related mental health?

England isn't such a terrible place to go and I hear that the Welsh health service is struggling in some specialties. Is there some prospect that she would meet others with similar problems?

She has been in a very bad place for five years now, she had very little help under CAHMs and this has contributed to the place she is in now. she is receiving help from a psychologist who specialises in eating disorders and has started to make slow progress and I would rather this course of action had time to develop before she is traumatised by being taken so far away. Between the Asperger's and the anorexia life is very difficult for her and us as a family, but I still believe she will improve more quickly at home with the right input than in a unit far from home, and I will continue to fight for her to stay at home, although soon the decision may be taken out of my hands. 

You have an awful dilemma here and my thoughts are with you. you have an awful, gut wrenching choice to make. If they are contemplating this extreme action then I assume that she is in extreme, i.e. mortal, danger. Is it possible that this course of action stands some chance when all other remedies have failed?

What alternatives do you have? Presumably the place that they want to take her to is a very specialised unit where they have some understanding of the mental place that she has got to.

Thanks outraged...I have signed the petition its a dreadful thing to do people who need their family, their home and their routines so much and to just take them away. I'm going to speak to a solicitor next week to see if I can stop this happening to my D and our family, thanks all for your advice :-)

http://community.autism.org.uk/discussions/health-wellbeing/living-spectrum/petition-may-be-interest-some

You might want to support this petition...these people are in a similar but more advanced position. If they win their struggle, your position is much strengthened by the precedent...

Thanks for the reply, it is an awful situation and I will ring the helpline next week. It is a section 2 of the mental health act. I'm so worried as I think her situation will be made so much worse if she's seperated from her home and family by force, she is very frightened. But she also needs help with the anorexia as it has a huge grip on her. Unfortunately there are no eating disorder inpatient treatment centres in Wales where we live...she would have to go to England and it's just too far, hopefully I can get her team to understand that she needs to be near home for treatment but they say there is nothing available...I'm so upset and frustrated...I'm fighting on tho for as long as it takes!

Hi - what an awful situation.  Apart from getting a family law solicitor you cd perhaps ring the nas helpline or the helpline of another relevant charity.  I'm sorry I can't be of any real help.  Presume it's a section under the mental health act so you cd check out that Act + see who else has been in that position + what they did.  Knowledge is power.