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Diagnosis Help for my mum

StarbugLister

I'm new here so first of all hello everyone..

Apologies in advance if this gets a bit long but its a long story (50 odd years to be precise).

I'm actually posting on behalf of my mum as she doesn't find it very easy to express how she feels.

Basically, my mum has always been a bit different and people have often called her 'eccentric', she's had difficulties interacting with others for as long as she can remember and didn't have any close friends at school. She didn't get any qualifications when she left school and teachers accused her of daydreaming and lacking concentration.

After leaving school she found it difficult to 'get on' in life and although she had a number of different jobs, she couldn't hold one down. So she decided to go back to college as an adult but didn't get on well here either because she had difficulty concentrating on her studies. However, she did meet my dad there and they quickly moved in together, got married and had me.

My dad's family never liked my mum though and were nasty, threatening violence against her and threatening to kidnap me. So my parents moved half way across the country to get away from his family.

After they moved my mum didn't work and didn't leave the house without my dad. Even when she did leave with my dad, she avoided anything that made her feel anxious, which included crowds, tunnels, lifts, esculators and most public bathrooms. This went on for 23 years until my dad passed away in 2013.

After this I moved back home temporarily to provide support to mum. She was suffering from depression on top of the anxiety that had plagued her all those years. After many visits to the doctor, trials of various medication, and lots of talking therapy, mum was diagnosed with Generalised Anxiety Disorder and Depression and put under the care of the Community Mental Health Team, and she still is now.

 This was all good movement in the right direction but when we both saw a documentary a few months back on Aspergers, it was like a lightbulb had gone off as so much of it seemed to ring true and we started to look around to see what other information we could find.

Mum took the Aspergers test (http://aspergerstest.net/aq-test/) and scored 43/50, and I called up the NAS phoneline to talk to them about the benefits of a potential diagnosis (as mum didn't feel comfortable on the phone). From this extra information, mum decided that she would rather know one way or another whether she had Aspergers so we went to the doctor together armed with examples.

Doctor's response was that it wasn't worthwhile diagnosing mum at this stage in her life (she's now 59) because she wouldn't get any extra support than what she's already getting from the Community Mental Health Team for her anxiety and Depression. I thought that maybe having an explanation might ease the frustration that I know mum feels about being 'different' from other people but the doctor wouldn't refer mum on to a specialist.

Mum also has a psychiatrist that she sees once every few months so we thought that we's bring it it up with her but she was dismissive and despite the examples that we gave she said that she didn't think that mum could be autistic because:

1)Mum doesn't have one particular special interest (e.g. trains) that she wants to read everything about. And

2)When the psychiatrist asked mum if she had any learning difficulties (like difficulty learning to read), mum said no.

Do these two things proclude mum from being autistic then?

There are so many things that seem to point to Aspergers like the following misunderstanding in a shop:

-Mum puts items she wishes to purchase on counter.

-Shop assistant says 'Is there anything else?'

-Mum (accused voice): Well if there was anything then I'd have put it on the counter wouldn't I?

After we left the shop mum was upset thinking that the shop assistant was accusing her of stealing. I explained to her that the shop assistant was just trying to provide good customer service and she eventually calmed down.

It's this type of misunderstanding that gets me thinking, as well as lots of other examples that I won't go into here (its long enough already!).

So, does anyone have any advice? Is it worthwhile my mum continuing to push for some kind of assessment with my help? Is there specialist support out there for people with Aspergers?

Sorry this is long and thank you in advance for any advice,

Heather x

  • hi HeatherD

    A lot of people, even professionals still don't understand autism fully, and even if it is a psychogist it doesn't neccessarily mean they are experienced in autism.

    It took along time for anyone to take me seriously about my concerns for my daughter who is now 16, and recently been diagnosed.

    I was told that it was thought that it was just depression and anxiety, because she didn't have a 'flat tone of voice', 'wasn't a mathematical genius' and 'didn't have learning difficulties.' 

    But her social anxieties and sensitivites cause her big difficulties in her life, and she takes everything literally too, amongst other things. 

    Eventually it was agreed she could be tested and was founf to be Autistic Spectrum Disorder - Aspergers.

    Unfortunately there's no real support where I live, but there might be support groups where you are.  But having a diagnosis has made a difference as my daughter said knowing why she has always felt different has been a relief in some ways.

    Your mum has done well to cope, especially after losing your dad, and I'd think she needs all the support and help she can get.

    You look after yourself too, it's a lot of worry for you too.

    This web site has a lot of useful information, but the people who join in the comments are amazing, and come up with really good suggestions.

    Thanks to them all.  :)

  • Hi again. This siggestion very much depends on one, single factor - your Mum has to be excrutiatingly honest with herself, but without judging herself.

    She needs to write down everything she thinks, feels and experiences. If you look together at a 'list' of AS traits, and she can see where and how she has 'ticked the box', that's a start.

    She probably spends time telling herself that the things she thinks and feels are 'wrong', 'nutty', 'not normal', 'mental' etc etc. I can tell you now that if it's her truth, it's her truth and she mustn't be afraid to say so. She can list her fears and anxieties, the things that she finds hurtful, abrasive or intolerable. For instance, I personaly feel like I'm being sandpapered all over by supermarket lights and that bloody awful crap music, and that's before I've wanted to kill everyone in sight who gets in my way...!

    This is all stuff that needs to be presented for analysis, so the more she can talk about it the better. Remember, the most important thing to us is to be accepted, and that includes acceptance that our experience IS our reality and cannot be changed. We're not loonies, dangerous mental cases or stupid children, we're AS, we're different, and that's all. We're nice too, and those NTs who appreciate our qualities actually appreciate us as people. Who doesn't want to be loved for who they are?

    I hope this is helping, both of you.

  • Hi HeatherD,

    This is the link on our website which shows what to do about going to the doctor when having an asd. Further down the page, there are resources on explaining autism to professionals such as GPs. Just thought this may be helpful to take to the doctor. If you need any further help please don't hesitate to contact us on our helpline which you can also email. Smile

    Sofie Mod

  • Thank you all for your responses, I don't get on here that often due to no internet access at home so I'm sorry if my replies are a bit slow.

    Thank you all so much for the welcome, I will see if I can persuade mum to come on here too because I think that it would good for her to talk to people that have been in a similar position to her.

    I think a second opinion is definately the way that mum should go in the new year, as you have all so eloquently pointed out, and I want to persuade mum of this too as she was definately discouraged by the comments of the doctor and psychiatrist. I will have a look at those threads that you linked me to, thank you.

    Other than the quiz that I have mentioned in my first post, are any of you aware of any resources that could help with explaining to a doctor why we think that mum may be on the spectrum?

    Thank you for your patience with my slow replies,

    Heather

  • Former Member
    Former Member

    This scenario comes up over and over. It's actually disgusting to here that psychiatrists can be so dismissive.

    Have a look at previous threads that talk about getting a second opinion 

    http://community.autism.org.uk/search/node/%22second%20opinion%22

    There is practically a "right" to get a second opinion see http://www.nhs.uk/chq/Pages/910.aspx

    Saying that it isn't worth pursuing it at her stage in life is age discrimination too! It is also a waste of NHS resources to keep treating someone without knowing the underlying casue of mental health problems.

    I was diagnosed at 56 and it has definitely been worth it.

  • hey heather and heathers mum.

    i would push for a 2nd opinion.  i was diagnosed at 45, after a lifetime of struggles, depression anxiety, low self esteem.  i too was being and still am, being treated for depression and anxiety, and it was through that i got my diagnoses.  inn fact it was my mum who suggested it.  when i was young it was not really on many peoples radar, and i kind of got missed.  i was lucky, my doctor put in a rferall to the adhd aspergers team and i got seen.  infact i cannot believe how lucky i was after hearing other peoples stories.  i was refered in april this year, and got my diagnoses on 24 of november.  it was like a weight being lifted, a light going on, that was why i was like i am, i may be older but that was not the point, age does not matter, knowedge does.  your mum is lucky to have you as a daughter who obviously cares.

    push for testing.  there is plenty of support for people with aspergers.

    good luck to you both

  • Hi HeatherD. Welcome to our family.

    What you describe is a classic story, in many ways. Others will advise you better on this point, but I believe that your Mum's doctor is required to have a pathway to diagnosis.

    The age thing. I was diagnosed at the age of 59. There are others on here who awere older when they got theirs. I can only say that my diagnosis has changed my life, starting with who I am, at last. I would like to tell your ignorant doctor that diagnosis is highly effective in releiving a huge amoun t of anxiety, and that he cannot possibly have a grasp of how important this can be if he dismisses it so easily. That's not a good thing to be able to say about the person who is trusted with your primary health care.

    You are fully entitled to ask for a second opinion.

    Many people identify themselves (and family members) in the way that you and your Mum have. It would be great if your Mum could come on here too - we can talk directly, we are anonymous so we can talk about anything we like, secure in the knowledge that we are SAFE. It's nice that you are here too, I'm sure you'll benefit.

    I simply wanted to welcome you, and let you know that we understand, we care (but sometimes have a 'funny' way of showing it) and we will try to give you help, answers, and support.

    Welcome again