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Parents of adult children

Complex issues with my Autistic 28 year old son. (Sorry Long Message)

13 replies

Gerda1951 · 25/05/2019 22:17

My autistic son is 28 next month and all his life he had been bullied at school, he hated it, he struggled very much at school, and even after an educational assessment they still never understood nor realised that he was autistic. He had a breakdown and it was as a result of all that bullying, plus a head of year plus, a PE teacher (a subject he hated), interrogating him over an issue that was not his fault. Interrogating him in front of two classes, as a result my son refused to ever return to school and didn't. He was eventually, after I managed to get help from a group called IPSEA, (they have the money to pay for independent educational psychologists and independent occupational therapists, which they paid for both in my son's case) this resulted with me going to a tribunal that brought about a statement of special educational needs for my son. However, before that the diagnosis was delivered by a consultant clinical psychologist, whose stated because son's desire to never return to school his severe anxiety, and severe problems with looking at people, a care coordinator should be involved with his education. CAMHS children and adolescent mental health, they never helped. At 18 he was transferred to CMHT community mental health for adults, they never helped either. He was taught from 13 until 18 at home by two home in hospital tutors, however because my son could not trust authority/teachers anymore he refused to face them, and for the next 5 1/2 years was taught behind his bedroom door. My son like myself unfortunately have no trust in the mental health system, I was abused within the mental health system very badly. As a family when my son was a baby we were split by social services. His sister and father were together, and my son at 14 months and I were together, in separate accommodation. His sister at that time was 14 years old, she disappeared for 10 years and when she came back into our lives, she discovered that her brother was autistic. She lives nowhere near us in the UK, we cannot travel to her, and she can only come to us when her boyfriend brings her by car. Her life is severely damaged too, she broke a leg and the surgeon's did not operate successfully, and there is a great possibility her leg will have to be amputated. Both my daughters and son have the same father however he has now died. Also both my parents my children's grandparents have died. My son only knows me really and the one he can trust. That's as brief as I can make it of the horrendous life he has no one, there is more to it but it cannot all be explained other than to say he has been extremely let down by the authority/system that we cannot trust..

My son is desperate to write to a single straight female in the UK, hoping he could build on a romantic relationship with her. He cannot cope with strangers straightaway, so dating is out of the question straight off. It would have to be a slow build up from writing to then meeting, and if comfortable going from there. We have tried pen friend lists within the autistic world as well as the neo typical world. He has had many bad experiences in both. However, the autistic world not only has been 'twisted' by the 'social engineering'. That is showing itself in schools as well, with people going in schools encouraging young children from girls to be boys and vice versa. The autistic society has enough trouble trying to communicate with one another as it is, never mind introducing complexes of different gender, My had been writing to a girl who lived quite a distance from us, for 5 1/2 years. She was autistic herself, but like my son had many other co-morbid difficulties. Her mother had been writing on a forum, the same forum my son had been writing on. She noticed my son was interested in some of the video games her daughter was interested in, her daughter wanted to write on the internet but was afraid to. My son offered to write to her, and that's how they got writing. my son had put his heart and soul into everything he wrote and sent her, at Valentine's Day last year he sent her a very special card and gifts. The girl was over the moon with it and sent him a 'posed' photo back of herself.. My son had made and created many jewellery pieces and sent them to her, huge gifts of this sort at Christmases and birthdays. At Christmas 2018 she sent a calendar of her artwork..The girl and her mother came to visit us one summer day last August, My son was over the moon.

Unfortunately, soon after this Christmas, this went very wrong because, my son explained, how much he loved her but the feeling wasn't reciprocated. In fact, through her younger sister, she discovered the term, ‘asexual’, and used that as the reason why she said she wasn’t interested in my son. In fact, the girl called my son a liar and many other things. What is even more hurtful is that her mother wrote saying that she had written some of the emails for her daughter, so exactly who was my son expressing his feelings to? He is extremely hurt by this and cannot get over it, he is desperate to find another single girl, but he cannot cope with face-to-face meeting straight off, as I explained in the beginning. The experiences of this girl has hurt him profoundly, I know we all have faced some rejection in our lives, but my son has constantly faced it in many ways. Again there is more but there is too much too explain.

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Gerda1951 · 25/05/2019 22:21

Can anyone please give some advice without involving mental health or social services please.

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SD1978 · 25/05/2019 22:33

I'm not sure anyone can give you advice, but didn't want to leave it after reading this. You and your family feel let down by everyone and I'm not sure if there is anyone who can help- if you don't trust anyone due to your past experiences. He can't force someone to love him, if they do t. Maybe try to focus on friendship instead of love with his letters? Do you still have any involvement with anyone from a support perspective?

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Ravingstarfish · 25/05/2019 22:38

What does he enjoy doing? Is there a club or activity he could do to meet people? There’s also online dating. I met my now ex online, he’s autistic and we only split due to distance etc

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Gerda1951 · 25/05/2019 23:55

SD1978 Thank you very much for reading the long message and offering some advice. Yes our family have been tremendously let down more than that, very much abused. I have had independent help that came in to help my son with the education at home but you won't believe that each of them had their own reasons to offer help and each was to benefit themselves not my son. I apologise if that offends the people who are truly honest, because I am too. Of course he knows jolly well that he cannot force someone to love him, that's not what I'm talking about. There was some inappropriate involvement here by the mother, don't forget she wrote emails on behalf of her daughter, and that's got to be wrong. Believing that it was her daughter that was writing the e-mails to my son. What the daughter did in going over them moon by the Valentines cards and presents she received, and then sending posed photos. Wrongly footed my son surely? No he doesn't want friendship, he wants and needs more than that, and why can't he want that like everybody else? No I'm afraid we do not have any involvement in anyone from the supportive prospective. We never had any supportive involvement, we never had any support ever. Only there was a speech and language therapist that came in every week along with the two home in hospital tutors. But I wouldn't say she was supportive in that respect, only in the respect that she trained to be an invigilator so my son could take some exams, which he did at home and he passed a few. I am very grateful for that. But when his statement ended, everybody disappeared. It is an extremely difficult situation to explain because people will think there's something weird that doesn't make sense. We have an extremely complicated situation that's difficult for people to understand, at one point when everybody disappeared I contacted a person who was the head of the National SKILLS group (which had closed after 40 years, the government were no longer funding them,) he was Lord Dalston and I believe he was blind. He made a speech in Hansards about the now defunct Connexions group. Who are supposed to help disabled children in education, we were involved with the SEN's section. All they ever said and did at the biannual review meetings, was to say they couldn't help my son. Their personnel changed all the time and when my sons education stopped at 19, the Connexions adviser disappeared without telling us. Lord Dalston made a speech about how insufficient Connexions were. He was referring to an individual case which actually required a judicial review with this particular case, which is exactly what we should have had and his PA suggested that to but no educational solicitor would take it on. There is no doubt in my mind a judicial review is what we should have had and then it would show how badly handled my sons case was altogether. At the tribunal the IPSEA reprehensive I had at the time wanted to call in a consultant psychiatrist to actually discuss the difficulties my son was facing not only now with social interaction but in the future. The consultant refused to come and the tribunal panel accepted his excuse, we were not privy to that. As a matter of interest that consultant received many complaints by other parents of his patients in my area and he disappeared out of the country. We wrote our case up the whole of both our own way condense this just before Christmas and in all including the evidence we had 130 pages, there is no way I can condense that and explain it and what damage was done to us as individuals and as a family. I thank you for trying anyway.

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Gerda1951 · 26/05/2019 00:16

Ravingstarfish He plays a lot of computer games, but he is a nature photographer, as much as he can be in our large garden and nearby woods. He takes his photographs and sometimes puts in photos into designs, He just sent them to accompany where they place these photographs and designs on products which he sells in his store on that website. He has really only started that this year. I have tried to get him to concentrate on that, but it's very are going. It's encouraging to hear you met your ex online, this is what my son had read, and knew it could be possible. And it would have been had this situation not deteriorated the way it did. I'm so very sorry you have split up with your ex, and you say it was due to distance etc. When this girl and her mother came one day last summer, my son said afterwards and still does how he knew his situation was healing him because of her being there. Of course I understand you can't force a person to love you, but there were things done wrong by the girl's mother that was very wrong. As I said in my previous message to the previous person who wrote an offer of advice, that our case is extremely complicated and I think it's impossible to try and get across all the things that have gone wrong, and why we cannot trust authorities. He finds it hard, near on impossible to face people face-to-face, so a club or activity is out of the question I am afraid to say. I am virtually crippled in pain most of the time, even when we have groceries delivered, they have to be left at the door and I picked them up and swing them round into the living room so my son can pick it up from there without being seen, he cannot cope with seeing anyone. When we have repairs in the house, things have to be negotiated, so I know they are not going in his room or anywhere near him because he cannot cope. I thank you very much for trying to help and give me some advice thank you.

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blimppy · 29/05/2019 12:06

It might be worth contacting your local branch of the National Autistic Society. They often have a range of support services to offer, including life skills, social communication skills and social and gaming groups. As they are focussed on people with autism they are very good at coping with anxiety and difficulties interacting with others. They are a charity - not part of social services or any sort of mental health authority.

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Gerda1951 · 29/05/2019 20:41

Blimppy. Thank you very much for your advice about contacting my local branch of the National Autistic Society. I'm sorry for my late response. I may well contact the branch again, however the local branch is 15 miles away from where I live, although sometimes I do have meetings in my town. However, I went to one of the meetings some time ago and I don't have a very good memories of that meeting. The speaker turned up and the branch administration turned up, but no one else except me. The majority of the admin staff as well as the speaker all said the group was mainly for parents with very young children with autism. No one came to the branch meetings with children in their teens and above. No one had ever heard of someone being taught behind the bedroom door for 5 1/2 years, I couldn't believe that this had happened but it had to my son. In fact very much like the Connexions advisers that were involved with my son at the time, who kept coming to my sons biannual review meetings, constantly saying they could offer my son nothing. That's if they turned up at all, the personnel staff kept changing, so it was very difficult for my son to even build a rapport with any of them. But like connections, the people became to that local NAS branch meeting said that I son should work in a cardboard factory! My son is more creative and intelligent, all he lacks his confidence, here is social anxiety that hits the roof, plus the fact he cannot cope with facing people face-to-face. Thank you again for offering your advice.

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blimppy · 30/05/2019 18:11

Hi Gerda. I'm sorry to hear your local branch hasn't been much help. I guess my area sounds a bit better catered for and does run courses and social groups for young adults and teens. One option, albeit expensive, might be to find a private counsellor with experience of working with ASD. The BCAP website might be useful in finding one.

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EggysMom · 30/05/2019 18:20

I would also suggest contacting the NAS but more with a view to finding out what they know about local groups for autistic and disabled young adults. I have a friend whose daughter has LD and attends such a group twice a week, they meet socially go to bowling etc.

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Gerda1951 · 01/06/2019 01:38

Hi Blimppy, many thanks for your further explanation and advice. It is so very hard to explain. I tried to put in as much detail as I dare in the first message I put on mums net. But unfortunately with every grateful suggestion of advice I get, I always seem to be telling everyone there is a problem with that, and very genuinely there is. We don't want anything to do with social services because they destroyed my family in the beginning split us apart. I can go into detail, but don't really want to suffice to say that for 10 years I made two sets of complaints against social services and won compensation for both. However that doesn't mean I trust them, because I don't. Because of the trauma I was in, I was under a consultant psychiatrist who severely emotionally abused me. This psychiatrist was involved in meetings to do with my sons education and care, before he retired. Because my son had the severe breakdown in secondary school, he could no longer face school because of being bullied not only by his peers but even the teachers. This is why he cannot face authority figures/strangers. The mental health teams on the CAMHS side did not bothered to help. The consultant who diagnosed my son, wanted specific help in the form of a care coordinator to help my son, who was being taught at home for 5 1/2 years, but behind his bedroom door because he couldn't face the home in hospital tutors. When he was 18 he was immediately transferred over to the adult part of mental health, again they never helped. And throughout this time no care coordinator was ever appointed. Complaints I made were ignored. However on obtaining copies of my sons mental health notes we were horrified to see secret meetings were taking place, and somehow I was still being blamed when I was cleared and received compensation. Can anybody answer that? Really that is a rhetorical question. We know social services and mental health were involved in these secret meetings, none of these people were ever around in the time my son was being taught, they know none of the history but think they know best when they don't. Also my son was taken off the adult mental health care, without us knowing, saying he was present at the meeting when he most certainly wasn't. I hope you can understand why we don't want to go anywhere where there is a possibility of social services or mental health being there. You cannot guarantee wherever you go that one of these parties could be involved in a group without anyone knowing.. To answer your question about private counselling, we are both on benefits and no we couldn't afford it and anyway our true names and histories would come out in any conversation, and I do not believe for 1 min that confidentiality would be kept here because it wouldn't. My son also knows that I was abused within therapy, and he doesn't trust any therapist. I just hope you can understand the difficulty I/we have, but I thank you very much again for your advice.

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Gerda1951 · 01/06/2019 01:53

Hi EggysMom, I also thank you very much for your advice in contacting the NAS to find out about local groups for autistic and disabled young adults. There may well be local groups/autistic groups although the national autistic society main branch is 15 miles away from us, as I said to the lady who previously gave advice. Most certainly was not interested in my sons situation, and horrified that anything like a young person being taught behind his bedroom door for 5 1/2 years could actually happen. Well I am here to state that's exactly what did happen, and although there were out side interest and for a while we did have an educational advocate. She kept changing her position, where in the beginning she was very good and independent advocate, later when she wanted to set up her own business doing exactly the same thing she needed money. Although I begged her not to take any money from our local authority, because she could then be no longer seen as independent. She unfortunately did take the money from the local adult mental health service, who did absolutely nothing for my son, just like the children and adolescent mental health did nothing. However at this meeting of change over, without the advocate even telling me that she had got the £5000 that she wanted to advocate for my son. I could tell the attitude of the meeting was horrendous, and she was clearly asked by the manager of the adult mental health team to see how badly she could treat me at these meetings. I'm not saying that other people don't have terrible instances with such people, but mental health and social services involvement in my family has been an absolute disaster and it appears to be carrying on behind our back in secret meetings that we're not even told about. Once again I thank you for your advice and I do hope your friend who has a daughter who has LD continues to get good support and continues to enjoy her social group going to bowling.

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Rainbowqueeen · 01/06/2019 02:08

You sound like a lovely mum who genuinely wants the best for her son

I agree, he should be able to pursue a romantic relationship if he would like to
But as is said many times on the relationships board,
1 people need to work on themselves first eg resolving trust issues, working out their own boundaries
2 often romance happens when you put yourself out there and do things that might be scary or beyond your comfort zone
3 establishing a wider friendship group or group of acquaintances can help you find that special someone

Your son is fairly inexperienced I think?? Remind him that it will take time and the first girl he connects with might not be the right one for him

Encourage his interests and try some of the groups that other people have mentioned.
I wish you both all the best

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Gerda1951 · 03/06/2019 19:44

Hi Rainbowqueeen, I thank you for your kind compliments, I do very much want the best for my son, but what I don't want is for him to suffer any more.
I'm glad you agree that he should be able to pursue a romantic relationship if he wants and he most certainly does, and why shouldn't he?.
Please don't misunderstand what I am about to say, I am sure I was on Mumsnet some time ago, I'm not sure thats why I wasn't able to use the username I wanted, maybe this is because I'm still there but don't know the password. In those days there were people on the forum that knew about the dangers of social services and the secret family courts, have those people gone, are they still there? I could have written a book on the first message I wrote here under this thread, but knew that it would be difficult enough for people to read what I had already written. Believe me my son has been through hell with all the different organisations and people he has come across. Every single one have lied and treated him appallingly, as well as the family. I'm not really asking you the question, but how does one resolve the trust issues with professional organisations and professionals who lie? He and I have always trusted, I would say far too much and as a result have been hurt so many times. Did you read what happened to him at school, he had a breakdown because of the bullying not only by his peer group but his teachers too. He couldn't face school any longer and was taught at home by two home in hospital tutors, but because my son had suffered so much he had to use the door, his bedroom door as a defence against tutors/strangers anybody. Autism often is accompanied by not being able to cope with looking at people's faces, in my sons case what he has experienced has made his autism worse than anything I have known or heard of. To even attempt to go for so-called 'treatment', from those who have already lied and treated you badly, is almost impossible to accept. Again for what I'm about to say please don't misunderstand me, but if you are as aware of the world as my son and I am. Something is very wrong, and the autism world is no different it has been totally twisted. As I said before autistic people have enough coping with their own feelings, never mind adding to the mix the question of gender change. My son wrote on NAS forum asking to write to a single straight female, and young male wrote to him saying he was looking for the same and asked if my son would accept his friend request. Perhaps naïvely and very trusting my son did accept, but very soon learnt that this male friend was not interested in what my son wanted. He informed my family was gay and was making advances to him in the messages he sent. He even interfered in the writing my son dead harm the forum, this male would question on the forum why my son had not written back to him, and then started inviting inappropriate suggestions on the forum. My son contacted the NAS forum moderators for help with this situation, moderators didn't answer. So I wrote to the moderators and very soon the moderators contacted by some good accused him of being homophobic, which wasn't the case at all. This young man was making inappropriate comments on the forum to my son, which then led the thread he was writing on to completely stop.
I have indeed try to remind him that it takes time to connect with a girl, but the girl he was writing to 4 over 5 1/2 years, has a problem here in the fact that her mother stated in the end she was writing some of the messages are daughter. That is after they visited us in the summer of last year, and there seemed no problem whatsoever, in fact the girl didn't want to leave. That is a difficult experience to go through, and things are certainly not quite right with her mother and daughter in that relationship.
I very much have encouraged him to try and concentrate on his interests and selling his work/nature photography and designs on the website he is attached to. However it is not easy, he has been so used to writing to this girl so long, and now he has no one he can trust and write to. It is difficult to get him to even go outside, I mean into town or anywhere. That always has been the problem, he cannot cope with strangers/people, and this situation has made its impossible now.

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