10 things you should know about living with autistic children

10 things that you should know about living with autistic children – from a parent’s perspective

1.  Spontaneity – we can’t just get up and go somewhere on a whim.  A fear of new places or a change in routine means we have to prepare our children.  Sometimes we make lists showing them where we are going, how long we are going for and when we will be returning home.  Sometimes we use the internet to show our children the place we are visiting and what it looks like inside and out (thank you google).  Even with this preparation, there is no guarantee we will even get out of the front door.

2. Conversation – jokes, sarcasm and ambiguous language cause confusion and upset.  We have to think about what we say, we have to allow for processing and to check that our children have understood us.  Often we have to repeat ourselves.  Occasionally we challenge our children when the moment is right and they are receptive to learning the meaning of a word or phrase.  Sometimes our children use all ability to talk and we have to use miming or symbols to communicate. It can be hard work  and sometimes we miss the to and fro of ordinary conversation, but over time we have started to enjoy our children’s literal abilities.

3. Togetherness - spending time together as a family can be hard to achieve, even within the home.  Attention issues, sensory difficulties and anxiety usually mean someone is unable to join in with family gatherings.  One child may have found relief playing on the computer whilst the other may be enjoying the solitude of their bedroom (or rather having a tantrum in it).  Its no big deal; we go with them but still there are times when we miss being together.

4. Celebrations – special occasions such as birthdays, Easter and Christmas, even bonfire night, are difficult.  The emotion and expectation as well  as the extra social demands and sensory stimulation can be overwhelming for our children which often results in difficult behaviour.  Special celebrations have to be a quiet affair, usually focusing on a wonderful meal at home, but they are still ‘our’ celebrations.

5. Holidays - Fear and anxiety make it difficult for our children to cope with a holiday away from the familiar surroundings of home.  Even when we do manage a break, behaviours can be challenging.  It is far easier to have a staycation and to try and have days out but then we are faced with the difficulties I outlined in no. 1.

6. Friends – my children don’t have friends mainly because of their difficulties but sometimes due to the meanness of others.  This means I don’t have many opportunities to meet other mums through the usual childhood activities.  Neither do I have the pleasure of enjoying our children’s experience of parties and sleepovers and the hustle and bustle of children running through our home and garden.  Sad, but that’s the way it is.  Instead I focus on helping my children to develop social skills and learning to make friends through ‘shared interests’.

7. Disorganisation – my children need a lot of help to remember things and to organise themselves.  As a result we label things, we produce schedules and we regularly prompt our children to remember their daily routines.   The use of reward systems can also help but their effectiveness is usual temporary.  Initial interest soon wanes so we have to be creative and devise different systems to maintain their motivation.  As a result, the laminator, stickers, trading cards and blue-tack have become household staples.

8.  The mess – not only do we have general untidiness as a result of forgetful children but there is also the additional mess caused by meltdowns, continence issues and other unusual behaviours.  Altogether these cause heavy demands on cleaning, laundry and general DIY!

9. Work - unless you are lucky enough to have access to good childcare, pursuing a career is difficult.  Time and the emotional energy needed to look after my children restricts what I can do workwise and any aspirations that I may have remain as dreams.  Nevertheless seeing my caring and advocacy roles as work in their own right can offset any sense of inadequacy I may have.

10. Relationships – so much time is taken up with helping our children, it leaves little time for us, the parents.  Relationships can come under massive strain as me and my husband struggle to find time to look after ourselves and each other.  Nevertheless making sure that we have one night off a week to pursue another interest (exercise for me, music for him) really helps to recharge our batteries.

-~-

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20 Responses to 10 things you should know about living with autistic children

  1. dauchka22 says:

    What a great post! I wish I had this 4 years ago, I would have printed it and given it to so many people who just didn;t understand what we were going through.;( Love your blog, just discovered it!

  2. wackalita says:

    I just recently got my own Asperger’s diagnosis, my son who is 10 got his five years ago. I work part-time, am going to university part-time, and exercise and am a single mom. I am happy to see these posts and blogs, makes me feel much less alone. I understand all of this, probably why we hardly ever go anywhere, and the guilt I feel as a parent in not being able to do more with my kids is hard at times. I often just want to sit around on my days off, and knowing it is restricting my children’s socializing is hard, but when i do get the energy to do something, my son doesn’t want to go anywhere. Anyway, thanks for posting, it does help feeling not so alone.

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  4. I certainly understand about the strain this puts on a marriage, my ex -oh could not cope with our daughter being disabled, and we got no support from his parents, we didn’t last the pace, but we got there all the same.
    good luck with it all, seems the team work and understanding is there.

    • Aspie in the family says:

      Sorry to hear about that. It is tough; we get no help from his family at all. But my mum and dad are pretty good; they do all they can but they are not getting any younger so there is only so much they can cope with. We struggle on and hope that one day things will become easier. Deb

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  6. Beth says:

    Thank you Deb for writing this. I identify with each and every step and also wish, like another poster has said that I could give you hug:) The emotional strain is hard to explain to anyone who doesn’t live with it daily…. I hate the fact that anyone has to feel as rough as I do some days… but from a selfish perspective, it reminds me I am not alone too…. there are others out there who know EXACTLY how I feel and that takes some of the isolation away and I thank you for that and apologise if that sounds self-centred or callous. Beth x

    • Aspie in the family says:

      Hi Beth, really appreciate your comment and no you don’t sound selfish or callous. One of the challenges I find is that because our children don’t look physically disabled that people don’t undersand the level of emotional strain we have to deal with (let alone our childrens difficulties). Too often parens/carers are blamed for their children’s behaviour which makes our isolation even worse. Hopefully by sharing and commenting on this post we can help to spread awareness of some of the aspects of autism and the impact on the life of parents and carers. I hope I don’t sound self indulgent by writing this post; I just want others to understand our lives more. Deb x

  7. Steph says:

    I agree and understand all of this. Sounds like you could do with a hug though – if you had time for it ;) I really hope you have some good friends nearby who help pick you up once in a while? take care x

    • Aspie in the family says:

      Thanks Steph. The summer has been difficult and not as promising as I had hoped. I haven’t been able to find the words to write about it yet, mainly becuase I’m so emotionally tired. So I did a list! Deb x

  8. Lizbeth says:

    So true, so true. I know what you mean on every single point. Well done.

    • Aspie in the family says:

      Hi Lizbeth; glad to know others identify with my list. I always wanted to write something like this so those personally unaffected by ASD could get a bit of an insight. Lets hope they read it! Deb x

  9. Blue sky says:

    So much good information here for others to read, but I do hope that your children make friends and that you get to meet other mothers of children with asd – it might even happen through blogging or Facebook as it has for me and my boy x

    • Aspie in the family says:

      The friendship thing does worry me, particularly for my daughter. We’re hoping to get them into some social groups this autumn – will blog more about this when it happens. As for me I am starting to meet other parents of special needs children (online and in town) so my life is starting to get a little better now. Glad to read you and your boy have met others via the social network. Deb x

  10. Jazzygal says:

    Print, laminate and hand out to the disbelievers!

    Great personal list. I know it’s hard but I get a sense of acceptance from you in this post. You both are aware and acknowledge all the issues and have found your way to live and prosper. Bravo:-)

    xx Jazzy

    • Aspie in the family says:

      I love your positive comments (and your blog); they are so uplifting. And you’re right, I do have an acceptance and an appreciation of the positive side of ASD. Sometimes though I have to admit to feeling a sense of loss and sadness during the difficult times but I try not to dwell on that. Deb x

  11. Galina V says:

    Could have been written by me. Thank you for writing about it all. So true.

  12. All these points used to affect us as well, but as Amy’s got older it’s not quite so hard. The parties and celebrations is still a problem as is disorganisation, mess and friends. This is a really interesting blog post and very informative to parents particularly with NT children who know very little about autism.

    CJ xx

    • Aspie in the family says:

      Thanks CJ. Glad to hear life has got a bit easier for you as Amy has got older. We’re the same with our son but unfortunately our daughters issues are complicating things at the moment. As a result I’ve had a difficult summer and I’ve been so tired I’ve struggled to write about anything emotional on my blog. My frustrations ended up with me doing a list, mainly as a way of informing others what our lives can be like. Lets hope people read it. Deb x

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