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Family doesn't get it

Margo

Hello,

I put this in "Parents and carers" because I was hoping to get some advice from parents with autistic kids. I'm a recently diagnosed teenager (I've suspected it for years, and I only learned that they'd been debating it with therapists for years recently) who also has ADHD and Anxiety. My sister(11 years old) and both of my parents just don't seem to understand the implications of what autism is. It's easier at school, when I have the energy to activily think through what I say and make sure I act as normal as possible, but at home when I'm tred or just woke up? I'll get punished for screaming after my sister won't stop tapping me on the shoulder, and then I'll have all of them (even my sister) scolding me all at once, while the TV is blaring in the background and the dog is barking at top volume. It's hard enough for me to read the room and know what to do when I'm in a good place, but when all of that is going on I cannot control myself whatsoever, and end up screaming, or flailing, or just running away at top speed. My sister also doesn't understand that making fun of my Autism/ADHD/Axiety is off limits, she equates it to making fun of my music taste. 

In addition, they don't get my needing space. Here's a list of things I've said/done that were deemed "Disrespectfull" or "Mean"

-Not wanting to hug or kiss them all the time

-Not wanting to be tackle-hugged or tickled by my sister 

-Wanting to be alone in my room instead of "Playing" with my sister. They say that she only makes fun of me because she wants attention and to be with me...

-Not talking to relatives or not making eye contact at dinner

-Not wanting to do "Family Movie night"

-Wanting to go shopping on my own and being very, very opposed to shopping with my mom. This one in particular, she's said things like "Why am I so repulsve to you" and others.

They've said that this is just "Normal angsty teen stuff" that needs to be corrected/is rwrong, because Autism has no part in it whatsoever. I tried to explain to them that I'm this way at school as well, so it's not "Growing apart from parents". What did your kids say or do that helped you understand them better? This is really taking a toll on our relationship. 

  • Hi Margo, this sounds tough, I'm sorry to hear you've been having a hard time at home. I maybe have autism in a similar way to you and also don't like lots of hugs, need time to myself and find it hard to make eye contact and chat with people I don't have much in common with. I don't mean to be rude, but simply can't do these things and I know some people find it hard not to get offended by that. So I'm sorry you've been getting in trouble about these things and really empathise with you feeling overwhelmed by them, I feel like this too sometimes and I remember getting really angry with my brothers and sisters too and getting in a lot of trouble for that. But I had no clue I was autistic and no understanding of why I was getting triggered so much. I think my parents reaction was pretty similar to yours.

    So I think it's really going to help if they can find a way to understand how it feels from your point of view. Try and find a time when everyone is calm to talk about it to them - definitely more chance of success than when everyone's stressed out. And then find a good way of helping them picture things from your point of view. I like the spoons analogy - I don't know why it's spoons, but the idea is that each day we only have so many spoons to get us through the day - it's a bit like charge in a battery - each time we do something tricky, we give up a spoon and so long as we have spoons, we're ok. But when we give out our last spoon, that's it, there's none left and then when someone demands another spoon from us - maybe you get tackle hugged or get asked to make eye contact over dinner - it means you're really likely to get triggered and angry or upset and withdrawn or unable to put your mask on to interract in an 'appropriate' way. At this point, it's out of our control - we have no spoons. So your family can help you get more spoons each day by allowing you to have quiet time or to do any of the things you've found that help you feel safe and calm. Or they can help by not using up all your spoons so quickly each day - expecting you to handle too much tricky stuff - so maybe agreeing to subtle lights and quiet times, to letting you not make eye contact or to supporting your perspective when you try to explain to your sister that you don't want a great big hug right now.

    Maybe they'd agree to sitting down with you to make a bit of a plan together about how to make this work. It might help them to see that you really want home life to work for everyone, that you can see that your triggered behaviour is causing problems for them but also that it feels horrible for you and you want to do something about that. I would really hope and expect that they'd appreciate hearing that you want to work with them to find a way to make things better. I suspect that on days when you have more spoons, it'd be easier to fake eye contact - looking to people's eye brows, for example, or to slap the mask on and engage in a little bit of small talk with relatives - nice weather today / what have you been up to today? So perhaps you could put that on the plan - that when you can, you'll make an effort. But I hope that they can learn to understand that these things that seem so easy and natural to some people do use up spoons when you're autistic!! Why is it spoons? Someone must know where this analogy originated?! :D

    Anyway, good luck with it all Margo! I hope you all manage to find a better balance for everyone.

    Best wishes,

    Nancy


  • I get it that this is unpleasant for you - it sucks to be in a family when they are so much in your face.

    While you live at home you will have to appreciate that while in their home you need to follow their rules however and this is likely to involve a few things that are uncomfortable.

    You can moderate some of these I suspect, how about:

    Hugging or kissing - agree when this is acceptable so you perhaps greet them in the morning and at bedtime - the rest of the time keep them at arms length and say "please respect my boundaries" and be direct and sincere about it.

    Contact with your sister and her wanting to play with you are going to be a challenge as she isn't old enough (and may also be neurodivergent) to understand what it means to you. Perhaps agree when you will spend time with her to play in a more organised schedule in exchange for the twice daily hug. This way she gets the attention just on your agreed schedule.

    Not talking to relatives is something I think you just need to tolerate - in a social group like your familiy it is best to follow some rules and as guests are not a daily occurrance then it is worth masking, being polite and minimising your friction socially here.

    Shopping with mum - do it but on an agreed schedule - perhaps every 2 weeks or so. She wants to spend time with you and your rejection probably hurts her so you are technically doing it for her while giving yourself alternate weeks off. Everybody wins.

    That is kind of the key to success in living in a social group - compromise.

  • Hi and welcome. You have to be 18 to be a member here, so I assume you're that age or older? So is moving out an option? There is advice on getting a job, finding a home and managing finances in the advice and guidance section of this website if you need it.

  • Good morning Margo, 

    I am sorry to read your post. We have a section dedicated to advice and guidance which you may find useful to explore. 

    What is autism?

    https://www.autism.org.uk/advice-and-guidance/what-is-autism

    Relationships:

    https://www.autism.org.uk/advice-and-guidance/topics/family-life-and-relationships

    Family relationships:

    https://www.autism.org.uk/advice-and-guidance/topics/family-life-and-relationships/family-life

    I hope you find some useful information and support.

    Wish best wishes, 

    Anna Mod

  • Well done for getting your thoughts out.  It must be hard living with all this pressure.

    I had a hard time when I did live with my family and although ASD was a factor, there were other reasons.   Even now, the family I do keep in touch with do not get it, and unbelievably - one or two actually mock the Autism by making snide remarks about it.

    If I do something they consider to be strange or repetitive, for example, I get a comment like 'you people are all the same'  or worse.  It is likely meant in fun, but it goes on and on, and the same old joke isn't funny when you've heard it 100 times, is it?  

    The difference though is that I've got a grown adult mocking me (who just happens to have an Autistic daughter of his own, so should know better) while you are dealing with your sister, and getting zero support.   Either way, it is ignorance that pervades in society. 

    I'd suggest you write down how this makes you feel and give it to your parents.  Try to get it all out in one go, and explain the effects - as you've done here.  Show the differences between siblings arguing and someone actually mocking your condition (which is what is happening).   It wouldn't be okay for someone to laugh at a physical problem, and this is really no different. 

    The idea of writing it down is that it doesn't turn into a debate or argument.  It might allow them thinking time to process & take action.

    I wish you all the best.  Please come back to the forum if you need further support. 

  • I can only offer sympathy. It is unbelievable how many families of autistic people just don't get it. That's a trauma in itself.