A photograph from our garden. Just five paces from the door. Part of Son’s world.

Our Son really struggles with health related anxieties. I remember the first pamphlet his Doctor handed to us about Aspergers all those years ago – second bullet point – may encounter obsessive fears over health and hygiene. For our Son they were real, life altering fears. Then in quick succession he lost his mum and both grannies. The fears became even more scary and real to him.

In the early party of his Aspergers life he was under the care of a wonderful Clinical Psychologist. She slowly helped but then she retired (and was never replaced due to the decisions backed by many of those in our current Government). His care became a real hotchpotch which achieved very little. Then we were so lucky. Son’s case landed on the desk of a young nurse health counsellor. Since then she has been the only constant through his care. Now because of Government cut backs, she is the only specialist help he gets. Although not an Autism expert she has patiently worked with him and delivered real benefits.

His fears became manageable.

Due to our Governments continued running down of the NHS, her workload has become ridiculous. She just can’t spend the time she needs to with him. But she does what she can. She still cares.

Then 2020 hit. Is it really only 4 months old…….

His fears have gone off the chart. Can you blame him. The worlds gone potty. Everything is up in the air and showing no sign of settling down. Because of the new clinical rules his wonderful health counsellor is not allowed to see him until after the crisis has eased. Being realistic that’s not going to be until the back end of the year at the earliest. So he’s started burning his bridges.

Bridges is a theme I am sure I will come back to over the coming weeks. The world of autism and the big bad world don’t naturally coexist. They are often separate. Links and bridges need to be built. Unfortunately the big bad world is not interested in developing links. It’s been up to our Son to try and build the bridges. That’s allowed him to enter the big bad world. Those links have never been particularly strong. NOW HE HAS BURNED THOSE BRIDGES. The outside world is just too scary and full of dangers. He has bunkered down to his house, his back garden, his world.

The thing is that when things start to improve again. And they eventually will. The big bad world will make no effort to rebuild those bridges again. One lone nurse counsellor will try. I will try. Sadly, I’m not entirely convinced Son will make much of an effort this time. Maybe in the future he will but it will take time. In the meantime his world has shrunk.

108 thoughts on “Ever shrinking world”

  3. I’m wondering… how did she help with your sons fears? What sorts of things did she say to him to make his fears manageable? Just wondering if you were in on these sessions and if you have talked with your son as she would.

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  6. I’m sorry ☹️ … does he have any pets?

    Obviously now is not the time to be in search of a pet – but could help later? Unless he’s allergic

    I would just say try to keep a routine, have things be kinda calm if you can, make him feel as secure as possible with you.

    Try to keep yourself in a calm relaxed manner. He will sense if you are stressed

    You are gonna have to be the main constant right now. But you got this, keep showing your love and devotion ✌️

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  7. You know, at this point, maybe it’s okay to just maintain this small world, because at least you two together make that world safe. You can control what comes in and out. You two can make it okay. He can reach out in ways he’s comfortable, like emails, and when the time comes…yeah, he’ll probably have to be the one that builds any bridge. Or maybe he’ll just wander alongside the water until he finds the right kinds of rocks on which to walk to the other side. That kind of exploration can never be rushed, so hug while you can, explore in the way that’s comfortable, and make each day an opportunity to smile. Hugs to you from Wisconsin xxxxxxxxxxxxxxx

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      1. I’m trying. Yesterday the governor announced schools will remain closed through the end of the school year (May/early June). I felt like the wind was knocked out of me. And the kids were pretty bummed.
        But we must keep trying, and making the best of what we can, yes? So. we will do that. 🙂

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      2. We are on 3 more weeks of lockdown now. Our school terms runs until late July so we have more scope. But the more I hear I’m not convinced how safe it would be in the UKs dreadfully overcrowded schools for kids and teachers – without significant changes. It must be so tough for you guys. Hang in there. Sending you hugs. xx

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      3. Thank you for the hugs! I didn’t realize just how late your school year goes, and you make an excellent point about class size. Blondie’s school is VERY small, and the boys’ school system is divvied up over four different buildings, so no one building is overpacked. Is your son enjoying the online school? I know you mentioned some courses do NOT translate into the online forum, at least as they are. I sure can say the same here, too…

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      4. He prefers it to school. He does worry about getting completely isolated but worries more about going to school. For him the ideal would be to continue with this. Our Governments plan has been to remove the maximum class size limit so that they can go for even bigger classes to cope with increased staff illnesses.

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      6. Sadly yes. Must admit this whole thing has made son so fearful of going through the house gate. Not sure that’s going to change any time soon. Not sure under those circumstances how he can go back to school. You can’t learn if your in meltdown mode. So I guess it’s a change. Plus not convinced my job will be there for much longer – it depends on public events and things like cycle races. Not a great time for them. So will just have to go with the flow. xx

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      7. Yes. So many jobs and professions are in an uncertain limbo. But you know, being fearful of the gate right now…I can’t blame him for that, and don’t wonder he doesn’t even want to think about it. Considering the state of things, I suppose it’s not worth pushing him toward the gate until there is much, MUCH more positive news about how the world is coping.
        Just keep swimming, just keep swimming, and we’ll find our way. xxxxxxxxxxxx

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      11. Hmmm. Not much of a summer break is up for us. I’m supposed to teach summer school, and I’ve signed the kids up for summer school (assuming there IS summer school), which runs 3 weeks in June and 3 weeks in July. Soooo that more or less leaves August? Hoping we can have some fun in August. 🙂 xxxxxxxx

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      14. I’m so hoping you do go. You need a break. A chance to breathe.
        Money is going to be so tight for us. Not sure the job will survive this mess. But days trips would be great. It’s going to take a huge effort to get son to venture into the world again. Especially if other people are about. xx

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  8. It is absolutely crazy that services that keep us healthy are unavailable in a crisis. Hospice staff visited a terminally ill family member and yelled instructions through closed doors and windows, go figure. It’s nuts. Feeling for you and your boy through this. Take care Linda

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    2. It’s ridiculous. There’s equipment and technology I’ve been requesting for years to enable us to work more efficiently, keep contact with families who live over 2 hrs away from our centre and to maintain a service for families as and when they need us … only in the last week or two have I witnessed what could have been achieved years ago! Great but incredibly frustrating at the same time.

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      2. Yep. Forced to carry out actions that go against everything they stand for. They make my blood boil as they stand there ‘raving’ about the NHS and care workers etc … it’s just empty words.

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  10. We’re each on our own little islands now. The thing is… I think that its gonna be like that for a long time. Things are changing. We have no idea what things are going to be like in the next phase, or the phase after that.
    I dont see anything wrong with burning the bridges, especially as they weren’t too secure anyway.
    You and Son will find your way, build new bridges or maybe learn to fly😘

    I think fear is giving people a little bit more understanding of what it can be like for autistic people or people with OCD, or phobias… The introverts and the hermits will show the world how to have a great life… quietly, peacefully, in small groups and small doses. 💌💌

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  13. In a way, your son’s reaction is completely understandable. In fact, I think in general we underestimate the effect this pandemic is having on kids, let alone those like your son.

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  16. You know, whatever you think you are his island and his world right now. You may not see that, and on the surface he prob doesn’t either. But you are because he is your boy and you know him best. That is what counts today. Tomorrow is of course another one. But hey

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      3. Today, out and about there was a sense of why the … are we putting up with all this from that lot? Yes people were queuing and all that. But the mood was quite different. Valid points were being raised, and there were certainly relaxations on the numbers in the shops. People, in being denied their ‘lives’ today were taking back some things without being stupid about it.

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  19. Oh Gary, I wish there was something positive I could say or do to ease or help this situation.
    It’s not just the elderly that are being pushed to one side and forgotten. Keep plugging away and looking after each other.

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  20. My first thought was you could try helping him to expand his world within the shrinking world and make use of the garden. Plant some stuff – flowers, veg or creepers that don’t take much maintenance and will grow and grow come rain or shine. It will give him a good chance to be outside in fresh air, see things spring to life, grow and he can have some control over. Plus you’ll get a mean set of veg he can then enjoy cooking and noshing when it’s ready 🙂

    He’ll be OK. You’ll be OK too of that I’m sure.

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  21. Just remember, when your son is ready, there is a whole world (mostly online given your location) of autistic people of all ages waiting for him, to help him and be a community for him.
    Not something to be pushed or hurried but we are a patient bunch and will embrace him when the time comes.

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  22. I am weeping. Tears of rage and tears of sorrow. I can’t add anything to what you have said. The wilful ravaging of the NHS over decades literally acts as an incendiary for me.

    Your plight. Your son’s plight. The plight of the nurse who wants to help and can’t because she only has so much time …. but I want to help you both. I do. My (step)son teaches autistic children and young adults here in the US. If you email me at osyth.storyteller@gmail.com I will happily put you in touch with him. He works entirely on line at the moment. I know he would work with your son. No charge. And you never know. He might manage to rebuild some bridges.

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  23. There are so many consequences to the actions and restrictions regarding this virus many people don’t even think of. For someone who depends on constant structures, this is kind of the worst case that can happen. But I am sure the light at the end of the tunnel comes closer. Over here things are slowly coming back to normal. I hope that this will be the same in the UK. May the experience that hard times of insecurity are only temporary be strengthening for your son eventually.

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  24. So sorry. I can’t imagine what he us going through. When you think of another person with not the Aspergers is fearing from anxiety, it’s overwhelming. He has you, and that makes him a lucky guy. Please dont fear too much. He will get through this.

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  25. This is very sad for you (and him). I was thinking last night that there will be so many people who were anxious about social situations already, but managing it with strategies. Now those strategies are just not going to be enough to combat the fear and anxiety this will create. So many will become agoraphobic etc. without any support to move through it. Would he talk to people or certain people on a video link? That’s a teeny bridge to the outside world?! X

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  26. Now they do and it is utter gobbledygook Well they have five things or something …I don’t even think it is five. I think like the hamsters they cannae count to three let alone five, that has to happen …In England anyway for them to end this. Noticeably testing is sort of not mentioned. But that is okay you know–NOT–cos so long as it is in hand, that’s fine apparently. Yeah. Even though they don’t specify what they mean by in hand. It could be anything. And get this… ”The Government’s chief scientific adviser Sir Patrick Vallance said–again conveniently when earlier today, correct me if I am wrong, he was screaming about this had to go on till there was a vaccine. “Sage looked very carefully at all of the evidence and is of the opinion that it is highly likely that the R is below one – the transmission force of the virus is below one, meaning that one person will, on average, be infecting fewer than one other person.’ IMAGINE that?? I struggled to. What is fewer than one other person? Is this less than two or less than one? Can you get such a thing as a person who does not exist? A bit of a person maybe that gets infected? Like their hand just??? And like I say I dunno I counted five cos my brain had been fried as a result of trying to follow what exactly they were saying, which was probably deliberate. Up here where things have been better and all, there was still some very odd senseless drivel about the schools and how even if they had been open the risk of infection would have been low. As to how the experts can say this with certainty when the schools were shut actually, I dunno. I don’t think anyone else does either. But hey, not being experts, who are any of us to know?

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  28. Well, Scotland publishes the actual figures of deaths by age group and region each week and it actually makes that statement re we are all at risk, not far off scaremongering. The bulk of the deaths.. and one hardly dare say it for fear of being branded an uncaring towards the elderly fascist.. but they are indeed among the elderly by a high proportion. Sorry but you can’t alter figures here. ( and in a way this is the population that we are staying at home to mainly protect so all this stuff re WE ARE NOT DOING ENOUGH FOR OUR ELDERLY, THEY ARE BEING AIRBRUSHED OUT HERE.. is not so when we are doing this and there’s still deaths .) Tayside, where I live has a high number of cases–there’s Dundee there so pop concentration– but Fife with far less cases does not lag far behind on the death figures.. so that is prob worthy of flagging as to why. I also understand that a large proportion of deaths are from carehomes. Now let’s just be clear on these. These are often not the kind of …oh grannie was getting lonely so she’s in one for company .. these are often people with terrible dementia who can no longer walk or swallow. Very very vulnerable people. How the hell can you explain or keep social distancing there??? 9 out of 10 deaths , here, there’s an underlining condition. The young have not come up on a figure here this far. The percentage in the 20-30 is tiny. Now… think about that stuff last week from Whitehall re, getting the under 30s back out there.. I bet the figures in England are not dissimilar from up here but on a far far bigger scale, plus out the four areas of the UK, Scotland was always top of the places to live in terns of NHS beds per head of pop, but the bottom line is, Whitehall and the press scared a country out of its wits into this lockdown, they threw a working force under a bus, And now?? Well I’ve said it would be interesting Personally? I’d rather captain the Titanic.

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    1. This is what happens when you let the likes of Cummings run stuff. His attitude seemed to be the elderly will take the hit, so what. We have gone into this with a strategy which has been rejected by the vast majority of virus experts. Now we have no plan apart from a sort of lockdown while keeping the airports completely open. But nothing on what happens next.

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      1. I fully agree re that shitbag Cummings who talking walls needs put up against one when right now there’s a ton of people going to the wall in this mess as we shut down everything to protect the vulnerable and now it is being screamed from various gutter rags that they have been airbrushed out of the figures, when everything we are doing is not preventing these figures. So what is the next move? That is what we all need to know as you say. The airports should not be open. Romanian fruit pickers should not be walking off a plane having signed a health dec… we can all that when we need to… and having had their temps taken. Jeessssus. Suicide rates are up, domestic violence is up, And still they stand there and get away with NOT answering a bloody question. it has been knee jerk knee jerk the entire way. Politicians shooting off their mouths —unchallenged. ‘Experts’ mouthing this and that–unchallenged. I have never seen the likes.

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      2. I see the Health Secretary failed to answer why airports are still open. Clueless. The only decent sport on TV is (and I can’t believe I am saying this) is watching Piers Morgan rip a minister apart interview. He is the only one asking the questions we need to ask. That’s how far we have fallen.

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      3. Well…interestingly a lot of folks…like quite political folks are saying that on twitter and to my hanging my head in shame, discredit, I have to agree…. Why? Not that I am hanging my head but that FINALLY someone is tearing in about them. Whatever the motives, FINALLY a journo is NOT going, yes, sir, no sir, three bags full sir, gimme another ten bags, to the ‘manure’ we are shoveling. Did I say ten? Pulease, gimme at least 200. Foot lesions are a sign of this virus ? Yes. Get that out there, scare them some more. 3 or 4 waves of this still to come ? Yes. Airports still open ? Yes..Without a vaccine we are doomed? Yes. Please don’t ask me any questions okay, unless it is 2 and 2 makes 3. Yes. No bother Mr Hancock, sir. I mean seriously how pathetic is it, but there it is. Not one journalist has done their job on this so this is what we are reduced to in a way…

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  29. The things we take for granted so many for us have been taken away, hard to manage without autism. Gary my hope is now with you ‘PM’ having be saved by NHS he may actually decide that it needs far more funding…am I living in a dream world?? It is the same hope I have for us here in OZ. Schools, hospitals,community health services all need more funding mental health autism support and workers specialists.. sigh

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