Mother of a 23yr old Autistic Adult

Hi.

I am in a similar situation with my son.  He has also been in trouble with police and will be attending court soon.

He is also going to be threatened with becoming homeless as he has refused to live with us.

I am at my Witt's end.

He has some interaction from social services but they have been of little help.

Hi,

it’s just so very hard especially when other close family members do not understand the complexities of autism!

to be honest I’m not sure that I even did until this particularly traumatic event has brought everything to a head. I feel like he’s just been diagnosed all over again (he was only diagnosed at 19yrs). He’s always had developmental issues and speech and language difficulties but the knowledge of autism wasn’t as clear 20 years ago.  After a really difficult time at school and managing to get a little job I naively thought he was coping with life - well unfortunately not !

We have now moved on a bit and the police will have to do their bit but at least social Services are helping.

I feel like I’ve been through a wringer .  I really understand your stress in a really difficult situation- have you had much support from friends and family?

I have zero support from family they have never understood it as it's an invisible dissability.  

He has some input from social services but I feel they have failed him and he has slipped through the net.

He doesn't except his diagnosis and can easily fool people into thinking he is more able than he is.  I feel many social workers are not trained in Autism enouh to spot these signs

Yes. I worry so much about my son too - he’s very weighed down at the moment by all his worries and years of struggles at school and college have really damaged his self-esteem. He’s a wonderful person and deserves to be happy and to have a fulfilling life. Because he’s feeling  depressed at the moment he isn’t feeling very motivated to do very much - so spends a lot of time on his IPad or watching tv. We do love to go out walking in the countryside though - we do that a lot and he really enjoys that. Sometimes very long walks - several miles. He likes to explore wild places and follow footpaths etc - seeing all the different birds etc. 

The problem is though that when we come back all his worries seem to come back to him. Neither of us are coping very well at the moment to be honest (I’m autistic too and struggle with anxiety). 
We are doing our best though. Hopefully we can work on our problems - but there’s so little support.

Thank you Kate,  I just worry so much about his narrow world and sense of isolation. Although I’ve got to say it doesn’t seem to bother him like it does me.  What does your son do to occupy himself ?  
it’s such a worry x

I really empathise. Your son must have had so many tough and challenging times - no wonder he feels like retreating to the safety of his room. My son also has retreated from the world in some ways (the social side of it anyway). I’m hoping that eventually my son will feel up to volunteering or something like that, but at the moment he is feeling far too fragile to go out of his comfort zone like that.

Solidarity to you and your son - you’re not alone, lots of people in this community can relate to what you’re both going through. x 

Hi again!

yes it’s easy to think that this is just happening to us although the more I’ve dug around for support, I’m realising it’s quite the opposite and there is such a gap in the support system , probably because most people unless they have a particular interest in Autism haven’t really got a clue about the complexities of it all.  
my son just ‘looks’ like any other, it sounds awful to say but if his disability was visible it may have been easier for him, certainly in terms of others understanding of him.

He is very mild and accommodating and seems willing to engage with any support available although this wasn’t the case when he was at college 4/5 yrs ago .  
I think he has learnt to cope over the years by retreating into his room and he has just ticked along.

Thank you so much for your support , it must be very tough for you xx

I’m sorry this is causing you so much distress - I can very much relate to that. I think we form such an incredibly strong bond with our children when we go through so much with them when they have extra challenges in life. 
I suppose from what you say the help your son is getting from Social Services is a positive thing? Is he ok with what they are putting in place for him?

My son is very reluctant to have contact with anyone. He won’t even discuss college at the moment, or engaging with any help. He won’t even discuss anything involving moving out of his comfort zone (which is staying at home most of the time, or the walks and days out we have as a family). He has really withdrawn a lot from things that he finds stressful (such as college). 

I have no idea where we’re going in terms of his future and how he will find a job etc. 

At the moment we are in a sort of bubble - not really interacting much with the outside world (my husband goes out to work but I stay at home with my son). This started with the pandemic really - when he was out of college due to the lockdown. His social anxiety (which was already very high) was much increased due to the pandemic. 

If you ever want to talk I’m here for you - just message me. It’s really nice to talk to people who understand. 

I hope the help your son receives is positive for him. Our children deserve to be happy - they go through so much and it’s so hard to see them struggling. 

Kate, thank you so much for your kind words and yes, you are absolutely spot on in what you say!

I have thought so much about everything that’s happened and suddenly I’m thinking about everything through an autism lens rather than trying to normalise everything- if that makes any sense!

I can’t get my head around one minute he’s got a little job (though obviously struggling and he said some were mean to him) , and the next minute SS are drawing up a care plan to include 2 days support to assist his socialisation and independence . This support will be on going with a view to some sort of supported living .

perhaps now it’s all come to a head he will get the support that he should have had ages ago. Police and SS both say it often comes to crisis point before help is triggered which is very sad really.

I think when our young adults are out of education and into the big wide world it is just too much for them to cope with. The expectations are much greater and they try so hard to fit in somewhere.

I just wish other people inc his brothers could get their heads around it all, it’s causing me massive mental distress 

Kate, thank you so much for your kind words and yes, you are absolutely spot on in what you say!

I have thought so much about everything that’s happened and suddenly I’m thinking about everything through an autism lens rather than trying to normalise everything- if that makes any sense!

I can’t get my head around one minute he’s got a little job (though obviously struggling and he said some were mean to him) , and the next minute SS are drawing up a care plan to include 2 days support to assist his socialisation and independence . This support will be on going with a view to some sort of supported living .

perhaps now it’s all come to a head he will get the support that he should have had ages ago. Police and SS both say it often comes to crisis point before help is triggered which is very sad really.

I think when our young adults are out of education and into the big wide world it is just too much for them to cope with. The expectations are much greater and they try so hard to fit in somewhere.

I just wish other people inc his brothers could get their heads around it all, it’s causing me massive mental distress 

Yes. I worry so much about my son too - he’s very weighed down at the moment by all his worries and years of struggles at school and college have really damaged his self-esteem. He’s a wonderful person and deserves to be happy and to have a fulfilling life. Because he’s feeling  depressed at the moment he isn’t feeling very motivated to do very much - so spends a lot of time on his IPad or watching tv. We do love to go out walking in the countryside though - we do that a lot and he really enjoys that. Sometimes very long walks - several miles. He likes to explore wild places and follow footpaths etc - seeing all the different birds etc. 

The problem is though that when we come back all his worries seem to come back to him. Neither of us are coping very well at the moment to be honest (I’m autistic too and struggle with anxiety). 
We are doing our best though. Hopefully we can work on our problems - but there’s so little support.

Thank you Kate,  I just worry so much about his narrow world and sense of isolation. Although I’ve got to say it doesn’t seem to bother him like it does me.  What does your son do to occupy himself ?  
it’s such a worry x

I really empathise. Your son must have had so many tough and challenging times - no wonder he feels like retreating to the safety of his room. My son also has retreated from the world in some ways (the social side of it anyway). I’m hoping that eventually my son will feel up to volunteering or something like that, but at the moment he is feeling far too fragile to go out of his comfort zone like that.

Solidarity to you and your son - you’re not alone, lots of people in this community can relate to what you’re both going through. x 

Hi again!

yes it’s easy to think that this is just happening to us although the more I’ve dug around for support, I’m realising it’s quite the opposite and there is such a gap in the support system , probably because most people unless they have a particular interest in Autism haven’t really got a clue about the complexities of it all.  
my son just ‘looks’ like any other, it sounds awful to say but if his disability was visible it may have been easier for him, certainly in terms of others understanding of him.

He is very mild and accommodating and seems willing to engage with any support available although this wasn’t the case when he was at college 4/5 yrs ago .  
I think he has learnt to cope over the years by retreating into his room and he has just ticked along.

Thank you so much for your support , it must be very tough for you xx

I’m sorry this is causing you so much distress - I can very much relate to that. I think we form such an incredibly strong bond with our children when we go through so much with them when they have extra challenges in life. 
I suppose from what you say the help your son is getting from Social Services is a positive thing? Is he ok with what they are putting in place for him?

My son is very reluctant to have contact with anyone. He won’t even discuss college at the moment, or engaging with any help. He won’t even discuss anything involving moving out of his comfort zone (which is staying at home most of the time, or the walks and days out we have as a family). He has really withdrawn a lot from things that he finds stressful (such as college). 

I have no idea where we’re going in terms of his future and how he will find a job etc. 

At the moment we are in a sort of bubble - not really interacting much with the outside world (my husband goes out to work but I stay at home with my son). This started with the pandemic really - when he was out of college due to the lockdown. His social anxiety (which was already very high) was much increased due to the pandemic. 

If you ever want to talk I’m here for you - just message me. It’s really nice to talk to people who understand. 

I hope the help your son receives is positive for him. Our children deserve to be happy - they go through so much and it’s so hard to see them struggling.