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I AM RECENT DIAGNOSED ASD MUM, MY DAUGHTER IS ASD, MY HUSBAND AND SON ARE BEING TESTED. IM EXHAUSTED TRYING TO AID EVERYONE AND MYSELF TOO.

Deedee
over 4 years ago

Hi all,

Can anyone relate?
I always felt I was different to others growing up, including my family members. It was very isolating. I just wanted to grow up and have a family who loved me for me. So when I was old enough I followed the typical stereotype of getting married, having a career and children. It was really hard work, I found I couldn’t juggle what others seemed to do so easily, so I carried on pushing myself more and more to be how people expected me to be in a bid to be normal. I was so extreme I would frequently end up in hospital with exhaustion. Over years I began to realise I had to slow down a little before I killed myself. But not understanding why and feeling like I was failing and accepting I just am not what my parents expected me to be. I cannot no matter how I squeeze and change myself I just can’t live their life styles and expectations. 
 
I was recently diagnosed with Aspergers and my world seems to make a whole lot more sense to me, my daughter was diagnosed last year and like I mention it is looking like the rest of my family are too. I was already finding life difficult before and now knowing the full picture I am wondering how the hell I am going to succeed bringing up my children when I lack my own skills in the same area. I also fear people coming in the home and invading and yet I know we all need individual help yet hiding is so much easier. It’s a constant loop. I know we all need input and guidance yet I am too frightened as I fear not having a handle on it all and so feeling even more overwhelmed with all the well meaning support we need coming in. I feel exhausted alone but also fear I will be exhausted if I let help in. I do run the whole family as even my husband  cannot cope without clear guidance. So all responsibility falls to me. I feel stuck. 

is anyone in a similar position where the whole family is ASD? 

  • over 4 years ago in reply to Plastic

    We would love to disappear to the country but my daughters needs are so high if we leave the area all support she needs will vanish. It took years for her needs to be acknowledged and I feel a move would have very negative impacts for her. So we are sticking it out for the moment. 
    my family sound similar to yours, we just don’t fit in with them at all. We have stepped away from them for this reason. But we have no other support except for my daughter having CAMH support really. But we do need it, I have little structure at home but find the idea of support workers coming in overwhelming. I want to stay in lockdown forever, where no-one can hurt or touch or invade our life. 
    I appreciate all offered support but I fear losing control of running my family, I may not be great at it but I love it. I just feel control slipping away.....

  • over 4 years ago

    Hi - We're 2/3 ASD.     

    The only real thoughts I can share are to stop trying to do 'life' the way everyone else does.       You are probably noticing all the usual social norms are just too much like hard work.     The whole NT social game works for them, but not necessarily for us.      Take a step back, look at your own needs and your family's needs and concentrate on your own happiness.      Set your sights on something realistic for your family and if that doesn't match with the 'keeping up with the Jonses' lifestyle, then so be it.    Your own sanity is worth more than a big tv and a shiny car.

    What sort of people are you afraid of coming into your home?   Will they add anything useful to you or just more stress?

    We do not fit with our families.  (there was enormous social pressure from my wife's family for us to remain in their approved rut)  We do our own thing, we find fun in the things we enjoy and, while we know they are all judging us, we don't care.

    I became ill and burned out a few years ago - we are re-jigging our life with the intention to disappear to the country and live a very low stress, low impact life.   

  • over 4 years ago

    Hello Deedee,

    You may like to contact our Autism Helpline team who can provide you with information and advice. You can contact the team via telephone on 0808 800 4104 10am – 3pm, Monday to Friday. Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an adviser. Alternatively, should you prefer to send a message, you can do so via their webform:

    https://www.autism.org.uk/services/helplines/main/form.aspx