Severely autistic son doesn't want family visiting

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Reikistar
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24 Mar 2022, 11:38 am

My 20 year old son is severely autistic, non verbal apart from the occasional word.

At the beginning of the year he moved into assisted accommodation after living with his father for a number of years. He lived with me until he was 12, but my physical health deteriorated so I had him part time after that.

He seems to be getting on okay according to the carers and he seems well cared for. The problem is he doesn't like family visiting. I've been a few times but after ten minutes he wants me to leave. He starts getting agitated and upset and saying 'Bye' until I go. He has been the same with his grandmother. He doesn't want anyone there. When I told him I was leaving (after half hour) he looked incredibly happy, with a big smile. I'm trying not to take it personally, hard as it is, just understand.

I'm on the spectrum myself although obviously nowhere near as severely. I'm guessing he feels overwhelmed by the visits and wants to be left alone. The staff at the accommodation think he's adjusting to everything being different. I know it's a big change.

I'm worried that he maybe feels rejected or abandoned but there's no way of asking since he has little language.

Maybe he's just growing up. I don't know.

Any insight or experiences would be very welcome.



DW_a_mom
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24 Mar 2022, 6:44 pm

I feel like your post covered the bases of possibilities and I don't know how to decide which it most likely is. I suggest you keep visiting on a regular and predictable schedule but plan on short visits. Let him know by showing up with no expectations that you care, and will always love him unconditionally, no matter where he lives. I know this is emotionally difficult, but try not to jump to conclusions. Be steady and loving; giving not needing. More clues may reveal themselves in time.


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Reikistar
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25 Mar 2022, 5:28 am

That's really good advice. I'll keep my visits short and to a regular timetable. I'll also try not to have expectations of him and just show that I'm there for him. Thank you for the perspective. I can't stop crying today. Feel so awful about it all.



SkinnedWolf
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25 Mar 2022, 6:46 am

I am 22 years old and have some social functions.
When I'm at home I lock myself in the room and stop my mom from visiting me.

I can't develop attachment feelings for anyone. But I don't want to hurt anyone's feelings.
My mom's repetitive words and interruptions to my work made me emotionally prone. It hurts her feelings, sometimes.
I don't want this to happen and it's beyond my control.
So refusing to visit itself is a strategy I take.

This is a possibility to explain your child's behavior.
Maybe this will give you some relief.


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timf
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25 Mar 2022, 6:57 am

One of the most common Asperger traits, especially in children, is anxiety avoidance.

This can result in a sort of mutism and social avoidance as anxiety avoidance strategies.

For those whose neurology creates excessive anxieties, there is a choice to learn how to manage them or indulge them with isolation.

Even with a desire to do so, there may be limits as to how much anxiety can be managed.



Juliette
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25 Mar 2022, 10:59 am

Hi Reikistar - this is a very common scenario in residential settings, in extreme circumstances for the very affected, if I may put it this way. In fact, it’s not uncommon for clinicians to recommend that for the sake of the adult in care, no family visits are best, sadly. The reason being, that the Sense of Self did not develop to the point where the autistic person could develop a different Self for different settings. This essentially means that the impact of bringing in Mum/Dad into the residential/care setting causes a complete disintegration of the Self every time. In other words, Mum/Dad belongs only at home, in the home setting. There are cases where children/adults on the spectrum don’t recognise their parents outside of the home setting at all.

I’ve experienced this scenario with my own children, particularly my youngest(now an adult). It’s often seen in very young autistic children when they are in their early years of school. In brief, this comes down to “referencing”. Some of us can cope moreso as we mature, while others never do develop the ability to cope with someone being “where they don’t belong” in the mind of the highly affected autistic person.

I sincerely feel for you, as this is heartbreaking and so very difficult for family members who want to be there and a steady support/presence in the life of loved ones, when they live elsewhere.

I worked with children on the spectrum for many years, have had connections with others who are working in the field, also autistic themselves, who are teaching staff in various settings, the world over, how to understand the behaviours and create autistm-friendly environments so as to bring about calm, less chaos for those crying out for help.



Reikistar
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25 Mar 2022, 3:04 pm

SkinnedWolf wrote:
I am 22 years old and have some social functions.
When I'm at home I lock myself in the room and stop my mom from visiting me.

I can't develop attachment feelings for anyone. But I don't want to hurt anyone's feelings.
My mom's repetitive words and interruptions to my work made me emotionally prone. It hurts her feelings, sometimes.
I don't want this to happen and it's beyond my control.
So refusing to visit itself is a strategy I take.

This is a possibility to explain your child's behavior.
Maybe this will give you some relief.


Thank you for this. It's funny as my son used to be very attached to me but that has changed, maybe through growing up. I don't have NT children so it's hard to know what would happen if I had.



Reikistar
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25 Mar 2022, 3:04 pm

timf wrote:
One of the most common Asperger traits, especially in children, is anxiety avoidance.

This can result in a sort of mutism and social avoidance as anxiety avoidance strategies.

For those whose neurology creates excessive anxieties, there is a choice to learn how to manage them or indulge them with isolation.

Even with a desire to do so, there may be limits as to how much anxiety can be managed.


Yes I think he is very anxious. Thanks for the perspective. It makes sense that he may be trying to manage his anxiety through avoiding too much contact with me.



Reikistar
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25 Mar 2022, 3:09 pm

Juliette wrote:
Hi Reikistar - this is a very common scenario in residential settings, in extreme circumstances for the very affected, if I may put it this way. In fact, it’s not uncommon for clinicians to recommend that for the sake of the adult in care, no family visits are best, sadly. The reason being, that the Sense of Self did not develop to the point where the autistic person could develop a different Self for different settings. This essentially means that the impact of bringing in Mum/Dad into the residential/care setting causes a complete disintegration of the Self every time. In other words, Mum/Dad belongs only at home, in the home setting. There are cases where children/adults on the spectrum don’t recognise their parents outside of the home setting at all.

I’ve experienced this scenario with my own children, particularly my youngest(now an adult). It’s often seen in very young autistic children when they are in their early years of school. In brief, this comes down to “referencing”. Some of us can cope moreso as we mature, while others never do develop the ability to cope with someone being “where they don’t belong” in the mind of the highly affected autistic person.

I sincerely feel for you, as this is heartbreaking and so very difficult for family members who want to be there and a steady support/presence in the life of loved ones, when they live elsewhere.

I worked with children on the spectrum for many years, have had connections with others who are working in the field, also autistic themselves, who are teaching staff in various settings, the world over, how to understand the behaviours and create autistm-friendly environments so as to bring about calm, less chaos for those crying out for help.


This is very interesting. Could this happen despite my son having seen me in different environments before, albeit within family -i.e I saw him at his own house for a time, also at his paternal grandmother's house. That said, sometimes he would get stressy and want me to leave when I was at his grandmother's house, but he wasn't anywhere near so distressed as he is now. He is used to carers and spent time with them on and off throughout his life, but he always came home to family.

It does make sense that he might be too much to cope with family members in his new environment if he hasn't developed a consistent sense of self. Thankfully he recognises me and knows exactly who I am - he also said 'Mummy gone' as he wanted me to leave, so that isn't an issue, but he seems unable to cope with family in his new home. I hope it will get easier. It is heartbreaking and not visiting him isn't really an option I'd want to consider.



DW_a_mom
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25 Mar 2022, 9:47 pm

I hadn't considered the factor Juliette brought in, but it does make sense to me. My son is only lightly affected by his ASD, but he has always had strong associations with specific locations. Schoolwork belonged at school, for example, so homework was always a huge hurdle. In college, when he had the opportunity to order his own life, he did all his homework and studying in a library on campus, keeping his living space permanently separate for relaxing and eating. Juliette has a lot more knowledge on the topic, but I'm wondering if a neutral (not used by him otherwise), specified location for visits might help.


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Reikistar
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30 Mar 2022, 3:56 am

DW_a_mom wrote:
I hadn't considered the factor Juliette brought in, but it does make sense to me. My son is only lightly affected by his ASD, but he has always had strong associations with specific locations. Schoolwork belonged at school, for example, so homework was always a huge hurdle. In college, when he had the opportunity to order his own life, he did all his homework and studying in a library on campus, keeping his living space permanently separate for relaxing and eating. Juliette has a lot more knowledge on the topic, but I'm wondering if a neutral (not used by him otherwise), specified location for visits might help.


Sadly they don't have the staff, it's only a very small home. Plus I'm limited due to my health issues. I'm going to try and visit every couple of weeks on a set day, for a few minutes at a time. We'll see how we get on with that.



DW_a_mom
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31 Mar 2022, 2:10 am

Reikistar wrote:
DW_a_mom wrote:
I hadn't considered the factor Juliette brought in, but it does make sense to me. My son is only lightly affected by his ASD, but he has always had strong associations with specific locations. Schoolwork belonged at school, for example, so homework was always a huge hurdle. In college, when he had the opportunity to order his own life, he did all his homework and studying in a library on campus, keeping his living space permanently separate for relaxing and eating. Juliette has a lot more knowledge on the topic, but I'm wondering if a neutral (not used by him otherwise), specified location for visits might help.


Sadly they don't have the staff, it's only a very small home. Plus I'm limited due to my health issues. I'm going to try and visit every couple of weeks on a set day, for a few minutes at a time. We'll see how we get on with that.


I do wish you the best, and hope your child adjusts well enough to eventually welcome you in the new surroundings.


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Reikistar
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31 Mar 2022, 4:58 am

DW_a_mom wrote:
Reikistar wrote:
DW_a_mom wrote:
I hadn't considered the factor Juliette brought in, but it does make sense to me. My son is only lightly affected by his ASD, but he has always had strong associations with specific locations. Schoolwork belonged at school, for example, so homework was always a huge hurdle. In college, when he had the opportunity to order his own life, he did all his homework and studying in a library on campus, keeping his living space permanently separate for relaxing and eating. Juliette has a lot more knowledge on the topic, but I'm wondering if a neutral (not used by him otherwise), specified location for visits might help.


Sadly they don't have the staff, it's only a very small home. Plus I'm limited due to my health issues. I'm going to try and visit every couple of weeks on a set day, for a few minutes at a time. We'll see how we get on with that.


I do wish you the best, and hope your child adjusts well enough to eventually welcome you in the new surroundings.


Thanks for your support. I do hope so too.



HiccupHaddock
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01 Apr 2022, 3:01 pm

It sounds like you are having a very hard time, I'm sorry for your hard time.

My son is on the spectrum (though mildly affected) and likes very much to have routines and to know what is going to happen that day or week. He likes visual timetables and to follow specific sequences of events for example at bedtime. I think he finds it soothing to know what is going to happen, while changes from his routine can make him anxious and upset (even if they are nice events in our eyes). We have to be careful to introduce changes very slowly and try to tell him in advance.

I wonder if it might help to establish a new routine if the staff at your son's home made him a visual timetable on the day you are visiting, with a picture of you on certain days, so that he knows you are coming on that day? Perhaps you could always arrive after something else in his week, and always do a certain thing when you arrive, like read his favourite book and bring his favourite biscuit, so that it becomes a predictable sequence of events for him?

I am sure that your son loves you very much, I think it is harder for autistic children to express, especially when they are upset and anxious but it is not any less true for them. I hope that you can slowly but surely establish a new routine for visiting him.



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01 Apr 2022, 3:16 pm

Also worth saying: a LOT of young people, both autistic and NT, get a bit panicky on the arrival of a parent into their first independant home. Your son may just be unable to hide that. He might handle meeting you better if it's somewhere neutral.


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Reikistar
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02 Apr 2022, 6:19 am

HiccupHaddock wrote:
It sounds like you are having a very hard time, I'm sorry for your hard time.

My son is on the spectrum (though mildly affected) and likes very much to have routines and to know what is going to happen that day or week. He likes visual timetables and to follow specific sequences of events for example at bedtime. I think he finds it soothing to know what is going to happen, while changes from his routine can make him anxious and upset (even if they are nice events in our eyes). We have to be careful to introduce changes very slowly and try to tell him in advance.

I wonder if it might help to establish a new routine if the staff at your son's home made him a visual timetable on the day you are visiting, with a picture of you on certain days, so that he knows you are coming on that day? Perhaps you could always arrive after something else in his week, and always do a certain thing when you arrive, like read his favourite book and bring his favourite biscuit, so that it becomes a predictable sequence of events for him?

I am sure that your son loves you very much, I think it is harder for autistic children to express, especially when they are upset and anxious but it is not any less true for them. I hope that you can slowly but surely establish a new routine for visiting him.


Thank you for this, it's really helpful. The visual timetable is a really good idea and something that has worked for him in other environments in the past. I'll design one myself with a photo of myself for the home to use on my visiting day. I've decided to visit every other Thursday morning so will see how that goes. I always bring his tablet and some sweets. The sweets went down a treat last time, the tablet not so much, even though he has always loved it before.