Update on my son: anxiety, sensory overload and autism

Further to my post An emotional start to the school year, I m still not able to get my son to school.  His anxiety and fear levels are still high which has made him very sensitive to the world around him.  All this has  been triggered by a change in routine, as a result of the school holidays and now the new school year.

The school has responded well and sent two assistants to speak to him and encourage him back to school.  Even though he is familiar with the assistants he couldn’t look at them or talk to them.  He had to sit at the top of the stairs whilst I sat at the bottom which enabled me to communicate between him and the assistants. 

His school are being flexible and encouraging him to start back as gently as possible, with the support of an assistant, which is good.  Unfortunately even with these suggestions, he still feels unable to return and my observations of him is that he is still too unwell to cope with school.  However, he has said that he does want to go back to school, but not yet, which is a positive sign.

The psychiatrist is once agan involed and my son’s medication has been readjusted  to suit his physical size (the medication he was on was starting to loose its effectiveness as he grew bigger).  Hopefully this should start to take affect soon and lessen the anxiety enough for us to work with him, though we are very mindful that we don’t want our son reliant on medication to cope with anxiety.  

The problem with this is that whilst our son has been learning to cope with some mild anxiety, when his anxiety gets to high levels like it is at the moment, he suffers heightened sensory responses which worsens the autistic behaviours.  At the moment he can’t cope with people around him, he is sensitive to noise and light and is complaining of ‘white noise’ or ‘drumming’ in his head.  He is also struggling to fall asleep.  Fortunately some coloured lights that I bought at the weekend are helping him to relax though the current situation has brought home to me the urgency of creating a proper sensory area for him somewhere in the house.

It feels as though we are in a vicious circle at the moment.  The worse the anxiety, the worse his sensory responses and his autistic behaviours become which then raises his anxiety levels which starts the whole cycle again.  Hopefully by breaking this cycle and reducing the anxiety, he will start to feel better, his autism will become more manageable and we can start to help him back to school. 

But as I know from old, this isn’t going to be an easy ride for him or us.

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20 Responses to Update on my son: anxiety, sensory overload and autism

  1. Aspieside says:

    I think 13 is a really hard age for them. All of the social pressures really overwhelmed my son. He is doing a bit better this year but he took himself out of mainstream classes because the kids were just way too overwhelming to him. I am not sure what type of program your school has but that sounds amazing that they would come to your house to try to help him come back. I hope he does decide to go back. I think sensory area at your house is a great idea! My son’s cat is his favorite mobile sensory area :)

    • Aspie in the family says:

      Hi aspieside, my son is definitely overwhelmed by people as well as the usual noise, light etc. However, his bad heads are beginning to subside a little as is his anxiety and we are starting to introduce him to the outside world again. Its a very slow process but it seems that his school are very flexible and accommodating which is what families like ours need.

  2. Alison Wells says:

    Hi there, I think this is my first time posting on this blog which I am glad to find and will be catching up on. We are going through a dreadful time with our son now nearly 11. It’s come to a head with the return to school. He has skipped some school this year (a day each week) but more than that his anxiety and related aggression levels are through the roof. He is constantly bombarding us with hostile and negative comments and complaints and then blames us. I did a wonderful course recently that helped me totally understand the mindset but what I find so hard to deal with is being constantly attacked verbally and sometimes physically too. This is a particularly bad time, we have had breaktthroughs and improvements in the last months. He is getting homework help at school although we’ve had to do some at home which is a nightmare. There are lots of things I want to try with him such as Ross Greene’s Plan B (I don’t know if you have used it) and other stuff but it’s all so complex now, eating, sleeping, mood, anxiety cycles, it’s hard to know where to start. We are getting help from school and are due back to our clinic but they haven’t been great on an individual basis so far. My husband is deeply depressed at this moment. Am probably writing at the worst time. I know I will pick myself up again. Just wondering if there are any resources links anyone knows around the depressive nature of being on the receiving end of all this and yet having to stay sane to sort it! I have 3 other kids as well, they witness the bad times. Sorry for rambling on, any suggestions welcome (and it’s good just to let it all out! Thanks!)

    • Aspie in the family says:

      Hi Alison and thankyou for commenting. I was talking with some other autism mums the other day and it seemed to be commonplace for the older child/younger teenager to experience anger, aggression and meltdowns like this so you are not alone in what you are experiencing. I recall having a very bad patch with my son when he was younger with regular meltdowns, aggression and swearing. It was completely depressing and exhausting and I really struggled with it. But what I did learn to do was to ignore it and try and divert him to something else; easier said than done I know particularly when we’re hurting inside. But I reasoned that part of the reasons for his anger was that his ASD was not being managed properly by school plus he was becoming increasingly aware of his own differences. Its not that I would let him get away with it but in the heat of the moment I found challenging his behaviour ineffective; I would usually wait till he was calmer and tell him that his behaviour was wrong and get him to clear up any mess. Sometimes it worked; sometimes it didn’t. I used to think we weren’t getting anywhere but fortunately his meltdowns and aggression have lessened with age though we still face a lot of other challenges, mainly his autism and anxiety.

      I understand what you mean about wanting to try lots of things but not knowing where to start; I felt like this when my son had his first breakdown and recall saying something to this effect to the Educational Psychologist, not that she understood or offered any help though. I soon realised I couldn’t deal with every aspect of his problems in one go and neither could my son so we prioritised. At that point we had to start with his mental health. Getting the anxiety under control was key to managing his autism and sensory responses and as his mental health improved we then sorted his education out. Interestingly getting my son into specialised education has been crucial to minimising his meltdowns and enabling my son to have a better quality of life . Unfortunately, as I’m finding, it takes a long time and there are moments when they regress which is what we are experiencing now. I still have other issues to deal with such as sleeping and his diet (I want to adapt it) but he just will not be able to cope with all these changes in one go so its one step at a time. Painfully slow; I feel I’ve been at it for years now.

      For us, as parents and carers, it is very tough and I’m not sure many people appreciate just how hard it is for us to care for our autistic children. It is also hard for siblings. Not even the professionals appreciate this. Saying that though I have found an amazing supportive community on twitter and the blogging community – just reading that other people are experiencing similar challenges reassures me that Im now alone. Also writing about it is fantastic therapy (I know everyone says this but its true). There is also a wealth of tips to read and try out. As for other resources and links, have you tried organisations such as Carers UK; you may be able to find information about the depressive nature of being on the receiving end of it.

      I have to admit that at my lowest ebb, I was suffering with anxiety and insomnia and felt very close to becoming unwell with depression. Somehow I seem to be managing better these days but I’ve learnt to take things slowly with my son, not expect too much from him or me and to do things step by step.

      I hope my reply isn’t patronising in any way (its not meant to be) and I hope you can find a way through these challenging times. By the way you are not rambling on; its good to let it out and share with others your experiences. Deb

  3. for the white noises in his head have you considered a sound pillow….they help with my tinnitus, and may also help to create calm

    • Aspie in the family says:

      Thanks for commenting Elaine. I’ve never heard of a sound pillow before so I will definitely be checking that out. thanks for the tip. Deb

  4. Beth says:

    Just wanted to day thanks for your advice Deb:)We have found the lights in B and Q – but J fell in love with a LED colour changing dinosaur- he loves it! Hope you and your family enjoy your Sunday:) Beth x

    • Aspie in the family says:

      Oh, I remember the dinosaur. Funnily enough my son was playing with that as well but then he went for the three light thing. Hope it provides some relief for J. Son has just gone out with Dad to a builders merchants so I’m having a quiet moment. Have a good Sunday as well. Deb x

  5. Jazzygal says:

    I feel for you both, really I do. So upsetting to see your little boy feel so overwhelmed and anxious. I am happy that the school is so supportive and that the psychiatrist is on board also, that’ll get him back on track. Hopefully, as he gets older and more mature he can learn strategies to help him self-regulate.

    Fingers crossed he gets back to school soon :-)

    xx Jazzy

    • Aspie in the family says:

      Thanks Jazzy. We are hopeful that eventually he will learn to cope better as he gets older but at the moment we are a long way from that. My son’s ASD is quite significant and coupled with his learning difficulties, life is tough for him. But more positively, he has been showing the tiniest amount of self regulation which we can build on but it will take time. For now we are hoping to get the anxiety levels down to a level that he can cope with and hopefully at that point we will be able to encourage him back to school. Here’s hoping. Deb xx

  6. Blue Sky says:

    So sorry to read this Deb, I don’t know if it’s more shocking the first time something like this happens or worse the second time, because you hoped it wouldn’t ever happen again, if I’m making any sense. I wish there was a solution to the summer holiday problem xx

    • Aspie in the family says:

      Its funny but I’m not so sure whether its worse first or second time round either. The first time was an appalling shock plus we had no support at all and felt very vulnerable to charges of bad parenting. This time there is support but I’m more worried because its happened again which is making me wonder whether he’ll ever manage going back to his school, a school he used to love. Makes me feel quite sad. And all because of the school holidays. I’m not sure I’m making much sense at the moment; I have days when I’m hopeful and positive and days (like today) when it feels hopeless. Deb xx

  7. theramblingpages says:

    Poor you and your poor boy, but it is very encouraging that he has said he does want to return to school. I know that feeling of dread about re-living something and I know how hard it is to hold onto the positives and see light at the end of the tunnel but he wants to go back and you also know he can come through it, he was strong enough to do it before. I know its not much comfort when you can see him so distressed and you feel so helpless. Will be thinking of you all. Thank you for the update as well, I was wondering how he was doing. Xx

    • Aspie in the family says:

      Thankyou RP. Its a hard situation to be in but I have to hold onto the thought that he did recover last time. Problem is I’m torn between feeling the urgency of him needing an education and the time and patience he needs to recover. Deb xx

  8. Beth says:

    Hugs, Deb xx
    My own 4 year old son is currently off school due to high anxiety and last weekend was the worse we have ever had. We too are having sleepless nights – last night he fell asleep ok but though 1 am was a good time to be up. Autistic behaviours are worse, sensory overload just part of everyday living, meltdowns more intense than I ever thought possible. I am finding this incredibly difficult to deal with, as we all are….. the physical pain on seeing your son so distressed is hard to put into words. I know this is no means the same as your situation and your son’s but I can empathise a little and I so feel for you so much. I hope the tweaking of your son’s meds will help, I hope that he can feel your love and I hope the vicious cycle stops turning for you all. Beth xxx p.s. what are the coloured lights you are using please- are they like coloured Christmas lights? I have thought of getting my son a sensory bubble tube, but his anger is so strong I don’t think it would would last very long:(

    • Aspie in the family says:

      So sorry to hear about your difficulties Beth; really feel for you and your son. Are you getting any support or help from anyone? Fortunately we’re getting help from the Children & Adolescent Mental Health Services (CAMHS) which we were referred to from school (GP’s can also refer). Reducing the anxiety and sensory overload is key to making their autism more manageable but it is hard. I don’t want to rely on medication (and neither does our psychiatrist) so I’m looking for alternatives. We have used clinical psychology in the past which has helped us to think about the different techniques we can use to manage our son’s anxiety.

      At my son’s special school they have a sensory room and this has a remarkable affect on my son; he is so much calmer but of course he isn’t there to access it. I’m trying to get him to a sensory room which has been installed at our local church/community centre but he refuses to go so now I’m seriously thinking of making a sensory area at home. My son really responds to lights, deep pressure and tactile things so we use lights, rolling him in a rug or weighted blankets or rubbery objects that he can mess about with in his hands. Those rubbery and squidgy objects can be bought quite cheaply in the pocket money areas in the toyshops – they can be very affective in calming children. The lights I got came from B&Q. It is light weight and consists of 3 balls in a rectangular black box – the balls are a similar size to tennis balls and change colour which my son loves. Cost about £18. They do another one with 9 lights in it but the colour change is less obvious.

      It may be worth seeing if there is a sensory room in your area that you can access because it will then give you an idea of the things your son responds to. You could ask a special school, your local education department or local autism services to see if they can help. Well worth trying because in my area some of the services in the special schools are being opened up for other SEN children not in that school.

      I hope you can find something that relieves his anger and anxiety. Thinking of you. Deb xx

  9. fighting for my children says:

    Sorry that ur son is going through this again. hugs for u too.

    • Aspie in the family says:

      Thankyou for your supportive comment, Fighting for my children. By the way, I love the name of your blog; it just sums up a lot of what we parents of special needs kids have to do. Deb

  10. JuliesMum says:

    Gosh this sounds pretty challenging for all of you. Start of term is usually pretty rocky for us but nothing like this. Glad to hear your son wants to go eventually: he must be so stressed though.

    Ps. Coloured lights – aren’t they wonderful?

    • Aspie in the family says:

      Thanks for commenting. It is a very emotional time; there’s the need to do the best for him whilst being mindful of how far we can encourage him without stressing him out too much. As for coloured lights; a brilliant reflief for him (and us) – might get some more. Deb

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