My beautiful and intelligent 37 years old daughter has been different all her life. After searching answers to her condition for 35 years I discovered last year that her symptoms fit 100% to the Aspergers Syndrome.
How to get her properly diagnosed and how to get her help in the UK? Otherwise she has no life. She lives alone in a council flat isolated, unable to work even if holding a good university degree, not meeting anyone but some online friends she has never met. She was diagnosed with Chronic Fatigue Syndrome 8 years ago, but that isn't the true reason for the way she is. I am desperate for help, but do not know how to get any.
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Ann4Ria
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Chronic Fatigue Syndrome can often be just down to thyroid, (Hypothyroidism) or even B12 Deficiency. If so that is treatable. Do put postings up on both the Thyroid Uk and PAS forums on here Health Unlocked. I am a member of quite a few sites on HU due to family members and also many illnesses are interlinked.
Thank you, Coastwalker. Your suggestions are good and valid and it is my omission for not having told that my daughter already takes medication for low thyroid. (Actually I am more concerned that presently she may be getting too much levothyroxine as her TSH keeps nearer to 0 than 5). She also is very good in making balanced healthy meals and takes vitamins and supplements. Yet she seems to develop total mental exhaustion after having to do something not belonging to her everyday routine. She cannot stand having to meet many people at the same time. She also avoids light and seems to be oversensitive to some sounds and noises.
Most people feel better when their TSH is 1 or lower, mine was 00.5 and I feel better when it is low.
Your Daughter's sensitivity to light and sound and exhaustion might be down to a B12 Deficiency, Thyroid and B12 D can mimic each other. Did your Daughter have her B12 bloods taken ? There is a grey area where you can have B12 D symptoms, Yet Doctors will say you are normal.
Chronic fatigue, vision and changed sensory functions are some of many B12 Deficiency symptoms.
Do put postings out on both Thyroid UK and PAS (Pernicious Anemia) on here Ann4Ria, I have learnt so much from members on both theses Health Unlocked communities sites.
No B12 bloods or any blood tests have been taken after the initial examinations when the first GP found strong blood test evidence that my daughter had Rheumatoid Arthritis, which a specialist then later denied...
Lyme disease has not considered amongst else. She had had an ulcer suggesting to a tick bite when living in a deer populated area.
She was just written off on long term sick and has since been "parcelled" in her flat into oblivion. No further examinations have been done in almost 9 years and along the line the diagnosis of CFS emerged. Her talents and life is being wasted away...
Two years ago Atos bluntly commanded her to work after a few simple questions, which drove her to the verge of suicide and caused antidepressants to be started.
I have made sure my daughter takes Healthspan B-vitamin complex daily amongst some other supplements, and she has a healthy stomach so we could expect the vitamin B12 to get absorbed. She eats balanced diet including meats and animal products and plenty of fresh vegetables and fresh salads. She has studied nutrition even more keenly after this fatigue started. She would like to get better.
And I wish I would have means to get her out from having been buried alive at the taxpayers expense. No rehabilitation programmes have been on offer... And how many such sad cases are there burdening the system, which lacks true rehabilitation initiative.
I have no answers, but wish that there would be a way for my daughter to get active, healthy, productive life. I'll keep on hoping and trying to get help.
I have learnt that low thyroid (Hypothyroidism) and antidepressants do not go well together, they can make you feel worse, push you down further into depression.
Google Hypothyroidism and antidepressants and you will see what I mean. I have seen many videos (by medics) on line about this subject.
T3 you might already know is a low thyroid medication, like t4 Levothyroxine.
Levothyroxine T4 has to convert in your body to T3, (T3 is needed in every cell of your body,)
T3 does not have to convert.
T3 has also been found to be one of the best depression treatments.
Google for your self T3 and Depression.
Also you can have B12 deficiency going on as well as low thyroid, many do. B12 can also give you brain fog and tiredness as low thyroid (hypothyroidism.) can.
Brain fog often gets confused by Doctors as depression.
I had brain fog and cured it by asking my Doctor to keep upping my thyroid medication, if I had listened to my Doctor who went by blood results, I would never have cleared my brain fog.
Ask for a B12 blood test or get it done privately by a pin prick test through the post. Many people take b12 but some either don't take enough or cannot convert it well.
You can buy sub lingual B12 pills to go under your tongue, which bypass your stomach.
I do feel you need to post up on both Thyroid Uk and PAS here on Health Unlocked as they can help you further about your poorly Daughter. Thyroid Uk members can give you advice about which bloods to ask for and information about how and where to get bloods paid for privately if you wish to.
Be aware some Doctors are clued up about T3 thyroid medication and some are not, but I think now doctors are starting to learn that many patients need T4 +T3 and many are prescribing it, but low thyroid and antidepressants you need to google Ann4Ria.
First go to the doctor and say what you think and ask if there is a referral system for diagnosis in your area. Contact the National Autistic Society and ask them if there is as Asperger Group anywhere near you or an Autism Group. Ask your local Councillor what is being offered for people with Asperger Syndrome or call Social Services and ask them if they have a services for people with Asperger Syndrome. In our city there is a service that helps some people. It is also possible to get a Support Person for the person from the N.A.S. via funding from Social Services but you need a diagnosis and you need to be persistent to get the funding. You can ask me more if you like. My husband has Aspergers and I support another man too. Both of them have a Support Person from N.A.S. to help them to cope with life.
Thank you, Myhealthneeds, for making me confident that there is help there if only I get my daughter coming to attend the necessary appointments and get the diagnosis. It is particularly helpful to know that there is a system providing a support person from N.A.S.in your city. Perhaps here, too.
I must get my daughter convinced that there is light in the end of the tunnel. I would feel helped also if her condition would finally be confirmed and the rest of the family would not just think her as a shirker or a drama queen, which she mot definitely is not.
You can look up the National Autistic Society on the internet and see if there is something in your area. Also they have a telephone Helpline that you can call to speak to someone and they would give you help. There is an email address to which you can send your questions. It takes a couple of weeks to get a reply. Your GP may be helpful or not, depending on their knowledge. They may not know if there is a local service. You need to be persistent in order to get what you need for your daughter. 1. She needs an assessment 2. She needs a service to meet her needs 3. She needs an Advocate to help her to look at her life and help her to meet her needs. 4. She needs you to continue to back her and believe in her as you do now. Which town do you live in?
I first need to get my daughter to her GP. But she needs several days/weeks prior notice to be able to get ready for any appointments/outings.
A week ago she cancelled my coming to tidy her little garden (in association of her upstairs flat), which I annually do for her in order to provide a place to sit outside in the sunshine for fresh air and vitamin D. I understood that she is too tired now to clear her flat for the minimum condition according to her standards for visitors. This may mean that dishes are piled hopelessly high, vacuuming hasn't been done for weeks... I have photographic evidence how it goes in a few weeks and months.
(And yet it usually only takes me a few hours to put things in her kitchen in order. The biggest problem is that she meticulously wants to wash all the plastic food trays and packaging so that it doesn't smell and attract the cats/rats/birds at the back street to rip up and spread the sacks during that one night while they are waiting for the rubbish collection. Well, it doesn't smell inside either, in weeks, because she has rinsed them perfectly clean... )
Thank God, she manages to prepare her meals daily and to wash her clothes promptly after I erected drying lines across her kitchen. She is petrified of spiders and has to steel herself to dare to venture down the back steps. Very good if she dares to take her rubbish sacks out even in three weeks intervals, but to hang the washing out, no hope...
Previously me and my husband went time to time to wash her dishes for her, but now she demands that she herself must manage to do them... to no avail...
So she would need regular help, but when she kept on hiring a private cleaner once a month from an agency, the changing cleaners soon started throwing her handcraft things and beads and pearls and even useful things away without asking her and disrespecting her, so she doesn't dare to employ them anymore.
Do you think it would be helpful or even possible to ask her doctor for a home visit? It would be very revealing for the GP to see how things are. She is always so tired...
Sigh... Now when I have dared to air out how things have been, it really feels like a mountain, too large and difficult to shift... Thank you for listening...
Yes, it would be good to get the doctor to do a home visit to see how she is. How would she react if you asked the doctor to call to see her and you were there to let her in? It might be a good idea to see her GP yourself and say that you are concerned about your daughter and would like her to call and tell her the reasons why...but she might then say that your daughter would have to ask her to come. On the other hand, I called the Manager in a Surgery and told her that a couple were not coping etc. They sent a GP out and a Social Worker the very next day! I had previously asked for an Advocate for her and finally one arrived who is now directing proceeding. So there are ways of doing things. I think she'd be better with having an Advocate once a week from the Autistic Society if you can get a diagnosis and get help from NAS. She could then relate to that one person who could encourage her gently to do things and build up her trust. What do you think? I'm not that far away, near Cardiff. We could meet up maybe? I occasionally come that way. Do you ever visit Cardiff? Miriam
Her GP will refer her to the specialist for a diagnosis. My specialist diagnosed me within an hour. They literally just ask you to talk about yourself and usually want a parent to be there so they can ask about the patient's childhood etc. Do you think your daughter would be able to go in and speak to the GP and then the specialist?
My AS is very mild, but it has affected me. And now I know what I have I am learning to work around/with it as best I can. A diagnosis can really help, because now I am part of a support group with social workers available, which I wouldn't have been able to join otherwise. Obviously there is access to CBT referrals as well.
If you do go to the GP, take a list of the traits your daughter has and be ready to describe them in detail to the doctor. Use examples of when social situations went wrong etc.
Your first point of contact is definitely your GP. I hope all goes well for you and please don't hesitate to ask me any questions. Although it affects me mildly, I still find daily life hard and I can't always cope well and need a lot of emotional support, so I know what your daughter is going through.
I am so glad that you did get the diagnosis and that it has helped you. It gives hope to us, too.
You describe the path, which I have suggested to my daughter to take, that we first go to her GP, but so far she has made excuses. She claims to be too tired and so on... Since she lives in a different town I don't even know her doctor's name. I only know that the GP is sympathetic, but unfortunately has been on maternity leaves a lot and thus my daughter hasn't had an appointment with her for a long time. I have planned to write to the GP about my observations since her childhood and thus draw the GP's attention to the need of diagnosis, but so far I, too, have felt helpless and discouraged, not hoping much...
Thank you for promising to answer my questions.
How did you come to think of a possibility of Aspergers, or was it your parent/somebody else, who noticed the connection? What were/are your greatest symptoms and difficulties to your life?
A year ago a friend sent me a story of a 34 years old Finnish woman, Paula Tilli, who lived in Sweden, telling how there her therapist had to convince her that she was a clear case of Aspergers. She was then interviewed in the Finnish TV and now she goes around giving talks about her condition thus helping others, who haven't been diagnosed yet. This Paula has several degrees from Uppsala University and is very clever, but cannot take care of her house chores at all or keep her employments because people get fed up with her because of her helplessness in simple everyday chores and because she is tiring so easily.
My daughter's symptoms and life had been so similar, so I promptly went through Asperger's symptom questionnaires with her and found an astonishing match. And then I also understood that her father, my ex husband, had suffered all his life from the same condition, even worse, actually and still is not diagnosed. I cannot express, how wonderful it felt, after having wondered over 35 years without answers, what was possibly wrong with my daughter, and having had to defend her from arbitrary accusations of the whole world. I felt a failure as a mother and I cannot begin to understand how she must felt under all the accusations and exhortations, which she couldn't defend herself from.
Sorry for being so longwinded. English is not my first language, so it takes a lot of effort to write. Sorry for mistakes.
I do hope you will find your life easier to manage with help and support. I feel for you warmly. Thank you very much for writing.
It may be that your daughter is simply adverse to getting tested. Perhaps she feels like there is no help, perhaps she feels any available help won't make much difference, maybe she doesn't want any false hope, or maybe she is in denial and doesn't want to admit she has this disability. Try to put yourself in her shoes. Not everyone wants to be labelled with something. When she says that she is tired, she may mean this mentally rather than physically. I know the Asperger's makes me very tired and I get angry with myself at times (I felt hatred towards myself and didn't think I was good enough for anything or anyone before I was diagnosed). It could be that she has given up thinking about what is different about her. Sometimes I wish I could take a break from Asperger's but the reality is that there's no running away from it as it's a part of who we are.
To answer your questions, my brother was diagnosed before me and through their research to try and help him, my parents realised there were some mild traits in me too. My AS is so mild that had my brother not had it, I may have gone undiagnosed. I am so thankful I was diagnosed because it has improved my life. Most importantly, I no longer hate myself and I no longer feel alone as I am part of a support group now with support workers who are there whenever I need them.
One of my symptoms/traits is my frustrating inability to compartmentalise. So when something is upsetting me in my personal life, e.g. a relationship breakup, I end up being unable to stop thinking about it. I cannot simply put it to the back of my mind. I can get stressed more easily during these times which in turn affects my work life. Too much in one go can lead to me crying and having a bit of a break down. It all depends on how stressful my life is at the time.
Another trait is that I need an incredible amount of sleep. When working full time I would easily sleep for 10 hours every night. The reason for this, I am told, is that people with AS have more mental activity. It takes a lot more energy for our brains to process social interactions. When I was younger I used to play things over and over in my head wondering what I did wrong which is apparently really common. I spend a lot of time sleeping at the weekends just to re-cooperate from the working week, even if I managed to get 8 hours sleep during the week. Again, I used to think I was lazy and moody and hated myself for needing too much sleep.
Another major trait is that I need a lot of emotional support. I get wound up and unable to make a decision about something. I just can't always see a straight path (usually happens when I am overwhelmed with things) and need someone to think it through for me. This tends to wear out my parents as they go to them for a lot. There are times when I get along just fine in life and then stress can suddenly hit me and my traits become more obvious. It put a lot of strain on one of my romantic relationships in the past, I put too much stress on him that he couldn't cope. I also take things to heart far too quickly and easily. This is something I'm working on now.
I was diagnosed one year ago and I have learned so much about myself. A couple of people have actually described me as confident. Not outwardly confident but it seems I know myself well and I know my limits. This was not true until a year ago. I used to just try and keep up with other people - like workaholics trying to do two jobs. That was insane for me. It led to a break down because I wasn't resting enough. People with AS get worn out more easily so the equivalent for a neuro-typical person is to work 3 jobs and be working 14 hours straight 6 days a week. I need to always keep this in mind and try to manage my extra-curriculars because I know very well that I can't do everything in one go. So in short I have learned so much. Even small things like word choice, I make a mental note not to say something that has caused offence in the past (but this is something that would be obvious to a neuro-typical individual right from the start).
You sound like an amazing mother. Your daughter may not always be receptive to your help, but the fact it is there is very important for her, in fact it is crucial. A lot of the time I'm not receptive either. My mum has told me she needs to pick her moments when to discuss stressful matters!
It has been crucial to my family too because now they know how to deal with me better. They used to just think I was selfish and moody, but now they realise that when I've had a hard day and am feeling overwhelmed I literally can't deal with anything else and need to retreat to my room for some space.
I hope this has been of help. It is at least some personal experiences. Overall, it can make life more difficult in some ways, but in other ways it can enhance life. I am a very loyal and careful person and I love these things about myself. People with AS carefully select people to be their friends and I am lucky to have supportive friends who are there for me and don't judge me. If you have any other questions, please let me know.
Try not to get too frustrated with your daughter. Some people with AS can make their worlds very small because they find it's the only way to cope. Some things can be very daunting, like the process of being diagnosed... xx
I am so sorry that it has taken me four years to come back to the forum and thank you! Your reply was very very helpful! Heartfelt thank you for taking time and effort to tell about your struggles. I hope you have been well and better able to cope in your life. What a relief it must have been.
Thank you all for enormously great help.
In the meantime I have failed in my efforts to get my daughter to be diagnosed. She did try and talked to a Health centre GP ( who saw her first time ever), and ask him for a referral, but was met with incredible ignorance. He just said to her that he didn't think my daughter had Asperger's…
He had never met my daughter before and dared to make that decision in a minute just like that!
It took several months before I got my daughter convinced that the GP had been utterly wrong . She finally dared to ask another GP, whom she had seen before. but yet again was to get disappointed. The GP, did not know where such diagnosis was to be obtained!!! So this GP asked the patient herself to find out where she should be referred.
My daughter was totally defeated and ever since has just found excuses not to even try again. My husband and me found out where those assessments are done in our area and gave her the prints and instructions to hand out to her GP, but my daughter has stubbornly buried herself in her flat and has done nothing to get any further in the matter.
Things weren't helped when January almost four years ago I had a nearly fatal fall and couldn't drive a car for a long time and couldn't go to help my daughter in her flat. As she is self consenting adult, I find it enormously difficult to make appointments on her behalf, but have only begged her to make a new appointment and promised to go with her.
Now I am really worried, (what is going on?) when my daughter has stopped communicating with any of her family. Instead she told us of having an internet "boyfriend" with whom she speaks every evening through the social media. She is very secretive about him, so we can only assume that she has not met this man, who might not even live in this country.
One of her brothers and myself went to see her and helped to clean the clatter from her kitchen but after that she still doesn't reply to our text messages. Her eldest brother visited from overseas and went to see her with his family, but she refused the invitation to go and eat out with us. We know that she is there, because she shares use of Netflix with us and her activity is reported to us by Netflix security as she logs in from different IP address. That is the only way for us to know she is there and alive. I am totally at a loss why she stopped communicating. There was no argument or animosity.
We presume, that she is so overwhelmingly engaged (in love)with this new contact that she doesn't find any time for her family. Or very worryingly, are we supposed to suspect that the unknown man is advising her not to have anything to do with her family? Is he up to any good? we wonder.
I don't know what we can do to help her. I am getting old and frail. She needs help, but she is the biggest hindrance to obtain outside help. She has just stuck her heels in and lives in her own cocoon. Such waste of life and talents.
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Diagnosed at 18
My asperger partner
Worried about my son
Getting no help/answers