Diagnosis Help for my mum

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

Parents
  • 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

Reply
  • 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

Children
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