Living with ASD and parenting

I am a single mother of a 7 year old boy. I am fairly sure he is autistic and he was referred to CAMHS some months ago so I don't know how long it will be before we see an assessment. I have a diagnosis of ASD.

Today, he returned to school after the summer break. When he came home, he called my mother and I overheard him say that he didn't play with anyone at break time - he said this quite matter of factly and nonchalantly because he is not bothered about playing with other children. My heart, on the other hand, completely broke. I am not a great socialiser but I understand its value and I hate to think of him stood alone in the playground with no-one. 

I do try to get him to interact with his peers. He goes to swim club once a week but doesn't talk to anyone else there. The inclusion worker at the school has been supporting him to establish and maintain relationships, clearly to little effect (although she tells it differently, of course). If I suggest any other clubs, he gets very upset (and given where we live, there is very little choice of clubs and nothing that corresponds to his interests). He never asks to have people over and is not invited anywhere except birthday parties but there hasn't been any invitations in over a year.

He is obsessed with video games and I have even tried this to encourage interaction to no avail. For his age, he is reasonably well travelled and on the weekends we are always out seeing or doing something. Yet, I feel guilty. It was suggested when he was in primary one that his "autistic traits" were merely learned behaviour and this assignation of blame is difficult to forget.

I'd be interested to get advice from other parents with ASD.

  • If I were to sign him up for scouts, do you think they'd let me stay with him (or at least nearby) until he got used to it? I understand that volunteers etc need to be PVG checked so I'm wondering if they would let me. 

  • Scouts was amazing for my asd son. They try a bit of everything plus their ethos of helping each other out etc makes it easier on him. We had 2 incidents but the leader nipped it in the bud straight away and both kids left my son alone after that. He had tried other clubs but the kids at scouts stick together meaning he has his first real friends. We held a birthday party finally for him this year with his scout troup

  • they find my diagnosis difficult to accept because it came so late in life

    Snap. But what I've found can help is the following analogy: "No-one would say to a late-diagnosed coeliac 'Hey, I'm sure you'll be able to eat a bit of gluten again one day!' or 'Are you sure it's not all in your mind?'" or another one "Please understand that asking me to go to a party is like asking someone with a nut allergy to go to a wine and nuts party; I'm not being boring, it's actually dangerous for me to go!".

  • I do have an autism mentor at university but not for support with self advocacy because I am very adept at this (I am quick to make my feelings known about anything I feel is unjust and the most recent target was the DWP), besides which my PhD supervisor and I have quite a good relationship so I feel comfortable approaching him about any issues I might be having. My family and friends are different, but I rely on them for some support and they find my diagnosis difficult to accept because it came so late in life. So they don't quite get it, but I don't blame them really. I never sought a diagnosis; I was pressured into being assessed by social services. It's been an adjustment for us all. 

  • I hate phrases about autism being an excuse, an excuse for what, being who we are? I often find NT's use their neurotype to excuse behaviour that is often distressing to ND folk

    You're so right. The one that occurs to me is when others forget the (pretty minor) adjustments they promised us, because most people don't need them & hence it doesn't stay on their radar, and fail to appreciate the distress it causes us because it's hard for NTs to empathise with us.

  • Former Member
    Former Member in reply to ncrbrts

    I understand parenting's going to be really hard, esp as  I go against the grain, but I really hope that I can be non-judgmental and accepting of my childs behaviour so that in return when she does have any issues, such as feeling lonely she'll come to me, as well as her dad, for support and then we can start discussing our experiences, as well as the knowledge we have of strategies we could try. I fear that if I'm not accepting of who she is she'll go in on herself and end up feeling alone in the world. This happened to my husband (who's NT) and he now plays a role at family gatherings rather than being his authentic self. Its also left him with a lot of self-esteem issues as he struggles to believe he's likeable as he is.

    I recently joined pregnancy yoga but dropped out as I don't actually like yoga. I've seen lots of posts on parenting forums where others have said they really had to force themselves to go but they did as they felt they needed to make connections with other mums to be. I've never felt like this, most likely as these interactions are superficial to begin with. Plus, from thier responses to my comments these women have shown that they have no idea what pregnancy is like from an autistics point of view, thus, emphasise how unaware the general public are my needs and how I experience life. I have one friend and a husband that often provides me with more opportunities to socialise than I want, so I'm more than happy to walk away from these unfilling interactions. Like your son I don't need or want lots of interaction.

    I hate phrases about autism being an excuse, an excuse for what, being who we are? I often find NT's use their neurotype to excuse behaviour that is often distressing to ND folk, for example, the use of 'white' lies. Yet, they don't show us the same respect and expect us to go against our neurotype to fit in with their social expectations  Rage

    If your family and friends aren't accepting of who you and your son are why are they worth causing this amount of distress? I'm much better at getting everything down in text form than f2. As such,  I'd be tempted to do some awareness-raising e.g write them a letter explaining the impact their behaviour has on you and your son's well-being, plus how autistic peoples needs differ from NT's but this is ok, plus its what you need to be happy.  If they don't accept who you I'd focus on finding people who will, such as joining support groups, going along to autistic themed summer events etc. Are you eligible for DSA as part of your PHD? If you are, are you or have you considered attending autism mentoring to help you to develop your self-advocacy skills?

  • I think you have a point about it being useful that he doesn't want to attend lots of social clubs. We would not have time Monday - Friday to do more than he does at the moment anyway. And maybe he also values his time away from people so I shouldn't force him out on the weekend.

    I feel that everyone else imposes their values on us and I feel obligated to comply. We have had social services input where I was made to feel like I'm doing a terrible job. My parents (NT), who support me with childcare when they can, consistently telling me he needs to mix with others. My friends with children say the same and look to me when he declines invitations to play with their children. His school have obviously identified a difficulty socially and have been attempting to address it. I am, however, repeatedly reminded that he has no diagnosis and I cannot use autism as an "excuse". And I worry about whether he faces a lonely future. 

  • Former Member
    Former Member in reply to ncrbrts

    I'm an autistic woman who's currently 33wks pregnant. I've just started maternity leave form working 4 days a week as a teacher, I was juggling this alongside a ft PhD, which I'm continuing throughout my maternity leave and for the first few years of baby's life.

    I forgo the small amount of spare time I have forcing myself to make the boy go out when I am supposed to be recuperating myself from social overload

    I need a lot of a lone time too, this helps me recover from sensory overload and I also just really enjoy it. I'm really hoping my daughter is autistic and has a tendency to like a lot of alone time too as I find people who need constant attention overwhelming. Having a child who didn't want to attend lots of social clubs would also be incredibly helpful whilst I work on my thesis as it would give me more time to dedicate to it. Due to this, I think your incredibly lucky and are in a really privileged position, especially as it sounds like your son is very happy as he is. Have I got this wrong?

    It comes across as though you're struggling and instead of embracing your son's personality you have a desire for him to be more NT (maybe you've struggled due to your autistic traits and would like him to be more 'normal'?). As such you're causing needless additional stress and anxiety for you both whilst you try and live a life neither of you want? Would it not be better for you to accept your son for who is he, let him act this way whilst he's happy, then support him to change if his behaviour does start to cause him challenges and he wants to adapt?

  • Yeah, like I say he goes to swim club once a week. If I suggest anything over and above this he goes berserk and then I feel guilty for trying to force him. He has refused scouts, karate, football... Over the summer we went to a few exhibitions in local galleries and he participated in the activities but wouldn't even look at the other children. If another child tries to talk to him he turns away or looks to me to answer on his behalf.

    It's extra difficult because I have 3 jobs and I am studying a PhD which means that I spend all week at either work or university or studying. I forgo the small amount of spare time I have forcing myself to make the boy go out when I am supposed to be recuperating myself from social overload. As a result I have regular meltdowns trying to keep it all together. It's probably small wonder that I'm failing miserably at parenting.

    I am in genuine awe at every parent ever.

  • Hi - I have Asperger's - I actually feel it's been a benefit for me as a parent because my consistency and reliability means that children find me easy to interface to.   Everything I do is logical and sensible so there's no ambiguity with me.

    Have you thought about getting your son into cubs?   Gentle, activity-based socialising that burns off lots of energy - double win!     You might want to volunteer as a parent-helper while he's there so he realises he's not on his own until he gets the hang of it.