Help needed

Hi, I am a mother of a 12 year old extremely high functioning aspie. For the past 2 weeks he has been complaining of being ill. He did have a slight cold but nothing some paracetamol wouldn't cure. He has missed a whole week of school as he says he doesn't feel up to it. He is complaining of a headache, so I have been to the optitions. Other than this he is just saying he isn't feeling well but can't explain what's wrong. I am considering taking him to our GP but my concern there is he can't explain what's actually wrong. I'm not sure if this is medical or psychological!! As my son does not understand his body, he just doesn't know how to deal or express with illness. I can't actually find anything wrong with him. He's off his food lately, not that he eats much anyway! He was out all day with his dad yesterday and was fine. Today he's back in his bed saying he's unwell!

I have no idea how what to do. I was just wondering if any other parents have been through this, or if there are any individuals with ASD who experience this themselves and have a better understanding than me!

I have found in the past that when my son becomes anxious over something he displays it with feeling unwell, feeling sick, headache etc. Usually I can unpick the anxiety and get to the root of the problem. This is different this time and I am at a complete loss!

Any advice would be grealy appreciated.

Many thanks and apologies for such a long message.

  • I think we’re doing as much as we can to make this world a better place for nd’s and nt’s and that’s all we can ever do and as we grow and learn more we can give more. I’m glad your son is proud of his autism, and at such a young age and I think it comes to all of us at some point in our lives, to find our place in the world, it seems like your son is going to find his at a young age which will be a great boost to him. If we keep our focus on the positives, I know we’ll all be ok. I think we’ve come a long way in a short space of time with our understanding of autism and it’s growimg fast. I intend to be able to make a difference at the level of policy and spreading awareness. Getting the diagnosis has changed my life completely and given me a far greater purpose so although the last 12 months have been a crazy roller coaster ride, it’s all settling down and I’m looking forward to new studies and spreading the word :-) X

  • I would just feed him crumpets and chocolate all day knowing that would help him. The issue I have is he is also lactose intolerant so he can only have his comfort foods in moderation! I think I've found a balance now to make sure he is eating but he doesn't become extremely ill due to his lactose.

    Thank you so much for your kind words. I can never fully understand how difficult this neurotypical world is for my son, but if I try to see the world through his perspective as much as possible, hopefully I can make his life that little easier.

    He has always been very proud of his autism and has understood it as much as a child possibly can. I believe starting comp and hitting puberty has made him question himself and his place in the world. He enjoys school very much as he loves to learn. Through all the help and information I have learned through this post I can now understand why this burnout has occurrd. 

    I am so glad you are now coming out of yours but this must have been an extremely hard 12 months for you. Personally I can' imagine leaving all my belongings behind in another country. However I know my son would view these as just material things and it would not cause him too much distress.

    I am extremely greatful for all your help and experience. I try to arm myself with as much information as possible to try and make my son's life easier. 

    I myself work in a school and am heartbroken watching children slip through the education net when it comes to autism. When my children are grown up my aim is to help other children with autism. Information is such a powerful tool but unfortunately ignorance is still bliss. Due to this it is people like yourselves who suffer and go undiagnosed. I fought for 9 years to have my son diagnosed, not to label him but to be able to explain to ignorant and uneducated people why my son is different. I could not be more proud of my son. He is very very special. I am hoping with this new information I have I will be able to help him through this burnout and then maybe prevent more in the future where possible. I just wish I could educate the whole world on autism and make the neurotypical world a more autism friendly world.

    Once again thank you for your invaluable help and your amazingly kind words x

  • Well I’ve lived on crumpets, chocolate and sometimes store bought sandwiches for over 12 months now and it hasn’t done me any harm but I’m ready for more healthy food now. It was better that I eat something rather than nothing, although it took me a long time to realise that, so the crumpets were actually a big bonus. 

    No-ones perfect but trust me, having someone who supports you and does their best to step into your world and understand you, is not only priceless but really precious and goes a long long way to help your son, more so than you could ever know. Your son is most definitely going to find his place in this world, there’s no doubt about that, whatever his place is and then all of this angst etc will be behind him. This is never an easy stage in life for anyone (teenage years) but in many respects, you could say your son is luckier than most because most teenagers don’t get the level of support and understanding your son is getting and at some point, he will realise this too. 

    If there was one thing I could tell my teenage self, it would be, it’s all ok, this is simply part of life’s journey, but you don’t have to change yourself to fit in with everybody else, be yourself and one day, I promise you, you will be happier than you could ever imagine and you will wear your autism badge with great pride and joy.  He really has got an exciting life ahead of him. 

    Regarding healthy eating, it might take a while but yes, once he realises the importance of eating and he can relate it to himself and his body etc, he will probably, like me, be a super healthy eater. I’ve spent 30 years researching health and doing courses from many different perspectives, it’s one of my special interests. However, when I’m in burnout, I revert back to what I was like as a child and eating anything is a struggle with lots of fear and anxiety surrounding it. 

    This current burnout started at the end of 2016 when I was living in Bali. I had just got a new place to live, I was starting language lessons, I had just secured my 6 month visa to live there and I had a great life over there when the burn out started to happen. I flew back to the U.K. feeling pretty distraught but I left all my clothes and belongings etc there because I thought I would be back fairly soon. But here I am more than 12 months later and I’m only just starting to leave the house. I’ve got to start again from the beginning, rebuilding my business’s, my health and fitness etc, I got into debt so I need to clear all that etc, but this time, because I now understand it’s a burnout and I have my diagnosis, I have the chance to prevent or minimise the severity of burnouts in the future. Truly, your son is a very lucky boy but of course, as you will know, you are also lucky to have him in your life. And yeah, if your son has any questions or queries, please feel free to ask us on here, it is my life purpose now to help and support others with autism as well as I can. I want to do my best to make the world a better place for people like us and especially for our children and the children yet to enter our world. Thank you for being you and for being such an amazing parent to your precious boy. X

  • Thank you. I' not perfect but I try to fit into my son's world as much as possible.

    Wow 12 months!!!! I'm glad your feeling ready to come out of your burnout now. My son would live on crumpets if he could. He would rather starve than eat anything healthy. I'm hoping that with maturity he will understand the benefits of a healthy diet and find a way to be able to try some now foods.

    I am very lucky with the education my son receives. His comprehensive school have put a lot of support in place so my son can access the best education possible. However there is no escaping the social aspect and the pressure which is what I believe has caused this burnout.

    I am extremely greatful to you for sharing your experiences with me. I have now been able to explain to my son exactly why he is feeling like this and I now know how to support him through. Many many thanks. I will share your story with my son as he often feels lonely and knows he is very different to his peers. I believe hearing an adults story, especially someone as academic as yourself, will really help him. 

  • From my experience with my daughters, the physical aspects of puberty were the easiest for them to come to terms with (other than some embarrassment over certain aspects) as they could get to grips with the science behind it and, I suppose, it all made logical sense. They knew what to expect physically and there was a sort of schedule to it.

    Perhaps because of this lack of logic, schedule, or scientific certainty, the emotional side was / is much more of a challenge. 

    There are some books available that broach the emotional upheaval of puberty but it may help if he can speak to a man who really knows what it was like from a boy's perspective. You too will remember all of the conflicting emotions, the tidal waves of unfathomable despair, the unreasonable irritation or anger that would flare up, and everything else puberty brought and it might help if you describe how your own emotions were affected and how you coped with that.

    Personally (I am HFA but it wasn't diagnosed until adulthood.) I also remember all of this as being utterly, utterly exhausting as I couldn't name or process all of these new feelings and the pace at which they fluctuated. I think if I'd had help at that age to identify, name, and explain these emotions and moods at your son's age it would have helped a LOT. 

    I'm pretty sure NAS have a section related to teenagers, it's worth you both having a look through that as I'm sure autism must bring it's own challenges to what is already a challenging time for young people his age. 

    Good luck!     

  • He’s a very lucky boy to have somebody caring for him who is so understanding. I’m the same with nutrition. Currently I’m living off crumpets and I don’t even eat those everyday although when I’m not in a burnout and I’m in a routine, I do eat a relatively healthy diet and when I do eat super healthy, it has a huge (positive) impact on every area of my life. I know it would help me now so I’m going to borrow a juicer and try and get some juices down me as the nutritions from juice hit the blood stream within something like 15 minutes without putting a strain on the rest of the digestive system, which is what I need right now because when I burnout, my whole body needs to rest. I’ve been in my current burnout, not leaving my house and often bed, for more than 12 months now, it’s the longest burnout I’ve had I think, and I’m ready to move now, I just lack the energy but I know with some good nutrition it will help and hopefully then I’ll be able to actually get outside for some fresh air and spend some time in my beloved nature. It will be hard for me to drink the juice because like your son I am weird about what I will and will not eat etc and the only liquid I drink is hot water, I don’t like it cold and I don’t like liquids with any taste so it’l be a struggle but I’m ready to try. 

    I’m the same as your son in terms of education. I’m about to start my masters in autism followed by my PhD in the same subject. Education is the only thing that really holds my attention for a sustained period of time but even though I was in the top sets for everything at school, because I couldn’t cope with the comprehensive school environment I gave up on education (until I was older) and left with few qualifications, of low grades, even though I was a A+ student. My life would have been different had I got the support your son’s getting. 

    Finding out more about burnouts will help your son and hopefully he will be able to avoid these continuous burnouts throughout his life. Hopefully now I’ve got more understanding of what’s happening to me, I won’t keep having them and my professional life won’t keep having these interruptions although had I understood sooner, I may have prevented them happening. 

  • Thank you. Yes we have taken puberty into account as well. He doesn't understand his emotions at the best of times. He is anxious about puberty. He understands the science behind it but the emotional aspect has gone over his head. I have been very open and honest with him which I'm hoping will help. He also has no problem with asking me any questions, no matter how embarrassing, thankfully.

    I think with all the new information I have gained from others today I have a better understanding which will allow me to try and explin things better to him.

    Any puberty advice for boys would be greatly appreciated tho

  • I think is right, but I would add that Puberty could be one of the main things causing your son's first shutdown - considering his age. 

    Up until now he's had his established coping mechanisms for whenever things build up and threaten to overwhelm him and, like most children, one of those coping mechanisms is the knowledge that when things get too much parents will ultimately step-in and sort things out. 

    Now, he's not only having to get used to high school (difficult for many reasons in itself, socially if not academically) but he's also trying to understand the effects of this sudden flood of hormones and the emotional roller-coaster it brings. 

    I'm a female with three daughters so I'm definitely not the person to give advice about how to help a young boy through the stresses of puberty. Anyone????  

  • Thank you very much for your reply. I will read into this

  • Thank you for your reply. I have never heard of a burnout before. If taking to his bed is what he needs then I will continue to let him do this. I was simply looking to see if others had had this experience and I could then rule out a medical issue. He has definitely felt the pressure since starting comp. He knows he is extremely intelligent and is very proud of this. He is in the top set in school which involves a lot of pressure to maintain his grades. I try to relieve the pressure as much as possible but he wants to be the best he can be academically. This is a lot of pressure for any 12 year old, let alone a 12 year old with ASD.

    By doing something, I meant making things better for my son. Trying to find ways to make this easier for him. He completely understands his ASD and we are very open and honest about it. Now that I have information about burnouts I can explain this to him.

    As for nutrition there lies my problem. My son has huge food issues and eats very little. What he does eat is neither healthy or nutritious. This has been the case for the last 10 years. The going out for fresh air is something I can do with him though. As for childcare when he is off school, he prefers to be home alone and is more than capable as he is very self sufficient.

    Thank you for all your advice. I will do more research into the burnouts. I find the more information I have the better I am to be able to help my son.

  • He's had a lot of change since September as he's started comprehensive school. He had a meltdown 2 weeks ago and said he didn't want to be autistic anymore Sob.

    I don't think it's anything medical as he's ok one day and then crying and sleeping for a few days after. 

    Could he be depressed? I suggest getting him to his GP. 

    https://www.nhs.uk/Tools/Documents/Mood%20self-assessment.htm

  • Hi NAS36510. I’m talking purely from my point of view. I’m a 50 year old who was diagnosed with autism at the end of October last year. 

    Reading your post, I get a sense that your son is simply overwhelmed right now. Imagine what it feels like when you are feeling overwhelmed. We aren’t thinking clearly when we become overwhelmed and for someone with autism, we are feeling overwhelmed and it’s like a bomb has gone off in our brain. (Sorry, I’m saying ‘us’, I don’t mean to speak for all people with autism, just  those perhaps who also experience what I do). It’s like when the bomb goes off, all thoughts and connections in the brain are shattered into pieces and scattered throughout the brain. Nothing makes sense and I certainly can’t tell anybody what’s wrong with me, what I’m feeling, what caused it etc. 

    I think my burnouts started when I started comprehensive school. Up until that point I managed pretty well but when I went to comp I just couldn’t make sense of it all and I would take to my bed or I would lay on the settee all day. I took a whole year out of school in my second to last year. 

    Imagine if someone had set a bomb off in your head. It’s like the best thing to do is to allow all those shattered and scattered pieces to gently, in their own time, settle themselves back down. For me, I want to say that what your boy needs now is lots of love and compassion and time and space to just be for a while. We are so obsessed, as a society, that we all have to do things at the same time and in the same way. For example, we all have to go to school at the same times, wear the same clothes, learn the same lessons, play the same games, etc etc and it just doesn’t work like that for some of us, and particularly those of us with autism. I would say fill his body with lots of great nutrition. A green juice with turmeric or something is a natural pain relief and provides the body with lots of almost instant goodness. Encourage him to get fresh air, exercise, lots of fruit and fresh foods. Let him know that there’s nothing ‘wrong’ with him, that it’s ok. It’s ok to take to your bed and get rest. Just because he’s not following the herd, doesn’t mean there’s anything wrong with him. Childcare could be a consideration if he’s not at school. Why do you need to do anything? What is it that you would like to achieve by doing something? Why is it not ok to stay in bed all day and not go to school? Why does he have to do anything? 

  • He's very tired and is sleeping a lot. He's having a few days in bed and then he seems ok for a day, then we're back to square one again.  He just keeps saying he's got a headache.

    Wow thank you so much, that's a fascnating read. I have never heard of a shutdown before!

    He's refused to eat or drink today, so after reading your reply I tested your theory. I gave him a chocolate biscuit and he ate 2 straight away!!!

    He's had a lot of change since September as he's started comprehensive school. He had a meltdown 2 weeks ago and said he didn't want to be autistic anymore Sob.

    I don't think it's anything medical as he's ok one day and then crying and sleeping for a few days after. 

    Thank you so much for your response it has been very helpful x

  • Thank you so much. I will definitely look into ear plugs for him. Thank you me too.

  • I struggle to sleep also I have a completely dark room no light from standby items and I wear ear plugs it's the only way I can get decent rest. I have also recently been given Vibes ear plugs they cut out background noise but let you hear people talking, I didn't realize how noisy the world was especially when sensitive to sound. I hope your son is better soon.

  • Does he seem particularly tired/exhausted?

    My only suggestion would be a shutdown. I certainly get headaches with those.

    I go into a shutdown when I've been overwhelmed for a long time, but not in a way that makes me 'snap' and causes a meltdown. It's more likely to happen when things just keep building up, until my brain has just had enough and gives up. It's most obvious to the outside world (in my case, my husband is able to recognise them) because I become very 'zombie'. My usual bouncy walk can turn more to a shuffle, I'm clearly low on energy, I often yawn a lot, I tend to stare and not really focus on anything, I can stop talking completely or I mumble or find myself stumbling over my words if I try and force them out, so I might say things in the wrong order/stammer a bit/have to stop and pause after each word.

    Internally, my perception of the world becomes even more hazy than usual. It feels like I'm seeing and hearing things from underwater. Words are mumbled, it's hard to focus and work out what's going on. Of course, that causes a headache. If a shutdown gets particularly bad, the issues with processing can reach the point where people will be talking and it's like they're talking a foreign language - I just can't understand what they're saying - and if I try to read something then I can recognise the letters and they should make sense, but I can't work out what the word is. Or I'll look at an everyday object and know what it is, but not quite be able to work out what I'm seeing - for example, looking at a box of biscuits and knowing that they're biscuits, but not being able to work out what kind they are even though I've seen them thousands of times before. And of course, there's the tiredness. Absolute exhaustion, like moving my body is the most immense effort.

    I definitely lose my appetite a bit when I'm in a shutdown. Or at least, I can stomach comfort food items but couldn't imagine sitting down to a meal, which is probably a good thing when I don't even have the energy to actually prepare a meal. Usually two things will bring me out of a shutdown - I'm pushed to the point where it turns to a meltdown and I can then recover, or I get enough sleep that I find the energy to drag myself out of it.

  • Oh thank you for your reply. That's very interesting. He does have headphones yes. I have spoken to him about school, doesn't seem to be any bullying. However he has just started comp and as he is extremely clever he's feeling the pressure slightly now. He's adapted very well to the social side and has found clubs to go to instead of being on the yard. I didn't think of others emotions. He's always seemed oblivious to other people's emotions so I didn't give that a thought! He has a 4 year old sister and I am querying ASD with her. I know he's struggling to deal with her at the moment. He just wants to sleep and stay in his bedroom but he's never been a good sleeper which is why I am worried now.

  • I had extreme head pains when I was a teen not sure if its an aspie thing, some day's you just cant face the overpowering world around us and need to lock ourselves away. Does he have noise cancelling headphones? Is there something going on at school bullying ect I missed allot of school through this and because I didn't understand the social aspects of school. Is he picking up on someones emotions around him? I tune into people when they are upset and it knocks me 4 six.