Published on 12, July, 2020
Hi, I'm the female long-term partner of a middle aged undiagnosed Aspie. We have spent years trying to work out why my other half thought and behaved so differently before suspecting it was due to Aspergers. He has had abasic assessment by someone in a local autism organisation and they are supporting us in trying to get a referral for a diagnosis. Although my other half agrees he has Aspergers it is me who is doing all the work trying to get us information, support and a formal diagnosis. Many of the things he has difficulty with have got worse over the last couple of years and I am now spending a lot of my time supporting him in his work at home as well as being the person who has to make all the decisions and get things done in our lives on a daily basis. In my struggle to find us help I have basically been told that there are very few partners in the Sussex area for me to contact and get to know. There seems to be nothing for us partners - I am physically and mentally exhausted fighting for the little help that is out there for my partner and yet there is nothing it seems for those of us in this what seems to be a "unique position". I am finding this difficult to believe that there are so few of us who are partners. I feel our experiences and needs are not the same as carers who are parents for example. Please prove them wrong. If you are a partner of an Aspie and want some contact and support from those who can understand then get in touch with me please.
It is great that your partner is willing to get help as this will help u as a couple. Do u have children? It is important that they also.get to voice their feelings and are supported as any diagnosis affects people in different ways. Although not conclusive I have met many families where there appears to be a genetic link. So if their are grandparents on the spectrum they .may not welcome a diagnosis and resent u for upsetting the Apple cart. Just something to consider and prepare for.
Legally your partner is entitled to an assessment, according to the Autism Act and the Autism Strategy. Tell him to complete the AQ10 and go back and assert his rights to an assessment. It is law.
Please see the stickied thread on the forum about assessment and diagnosis for adults, print it off and take it back if needs be. Maybe bypass the GP this time and write a complaint to the neuropsychological centre and quote your rights. Say that you would hate to have to involve PALS or your MP...
Yes, we know this and it's been worrying for me as I've known this for sometime. Our GPs would not take our concerns seriously and basically said Aspergers was just a label and they honestly do not have the slightest idea about how it has affected my partner life and also our lives as a couple. Their ignorance is truly pathetic. I'm still trying to get him a proper diagnosis so he can hopefully then get some support. I've been going around in circles with no-one taking us seriously for years. Before Christmas our GP finally relented and said he would refer him for diagnosis after we said that the local autism organisation was willing to write to the doctor requesting a referrel. We've just received a letter asking my partner to attend a hospital and make an appointment for a neuropsychological assessment. I telephone the hospital only to be told it was a mistake and that they have written to our GP telling him that they are not willing to see my partner. So, I don't know what's going on and again we are back to square one. We've made an appointment to see the GP again to ask what's going on. It's never ending - we're going around in circles. I'm afraid we're both suffering from burnout. At least my partner has hopefully some kind of support even if we have to wait until he is "officially" diagnosed but there's nothing for us partners out there as apparently there's not many of us around and so the need is not recognised. We have no-one to talk to or who can keep us psychologically going when you're having to deal with this attitude from the medical profession for years and fighting the system on your own . Hence the reason why I am hoping to make contact with other partners in this part of the country. Maybe we can help support each other.
http://www.autismsussex.org.uk/
http://www.asfamilysupport.org.uk/AdultServices/carer_support
Your husband is probably suffering from "Aspie burnout" as a result of existing undiagnosed all that time. This means that coping abilities decline due to the stress overload.