Parents of children on the Autism Spectrum

She is in the special needs unit, or it is called FOPS at college. It is Further Opportunities Programme or something is, I don’t know what the S is I can’t remember. And so within this programme itself it is like a college in a college and so they have different levels of different ability, i.e. Nicola is one ability, and then they might have the more advanced autism or they have got Downs or they have got ADHD so they … and basically the whole programme on whatever level you are works from Our Skills for Life and then it sort of branches off into loads of different things compared… and then they match you your ability to the section that you do.

 

Nicola first of all, when she first went, she done, she went to go to do GCSE art because she had done it in school and not got a good enough grade that could be classed as a pass, so we said, well you can do again if you want, do it in the college but she couldn’t keep up because they were going at such a rate, because the college year is shorter they had to condense the work into a shorter space of time. So the prospectus was the same amount of work that she had but in a smaller… so she couldn’t keep up basically the rate they were going so they took her out and put her into the FOPS, the Further Option and there she had done like computer studies, English, maths, at the moment she is doing like a child skills programme and basically it is all to do with might they might need if they ever go independently and she will have various B Tech certificates and things.

 

I don’t know if they actually mean anything in the outside world but she will have something for her to say well I achieved this, I achieved that yes, but it is like a college within a college. It is a set up and in there they take all disabilities whether it is like a mental disability or a physical disability, or they are all mixed together. It is good because they all understand that everybody has got a problem that is around them and that is far as it goes and then they can just acknowledge it but leave it at that you know, and there is nothing more said, which is good.

This is what is at issue is she can get all the mentoring support for her educational side. But it is the social side. It is somebody going in there three hours a night checking her fridge, checking that she washes, checking that her laundry gets done. And at the weekend making sure she is okay doing her shopping. Because I will send her out shopping and sometimes if she has got seven things to do it might take her four trips.

And I mean I asked her every day last week, please go and pick up mini statements from the bank to see what has been paid in and when, because her money goes in all over the place at the moment. She never remembered any day. And she would go out and I would say, down the road to the shop, and it is not very far away and mini statement? “Oh God, I forgot it. I will go down again.” I said, “No, just leave it.” So I said, “It is too late. I needed you to do it, so I could pay something in if I needed to.” You know pay a bill or whatever. But it is all this kind of thing and they say, they are trying to stop her having support at night. I mean what the university want to do is, they want to be put some one in hall with her, who is going to be there, will check that she got back safely at night, just as I would do, because I can’t do it. I mean if she is not back what am I going to do from here. You know and if she does start nightmares again and she is starting dreaming a lot more.

 

She tells me some of her dreams now and they are not nightmares. But they are dreams and they are getting… I dream very, very vividly and I know it is something that is coming because she knows that changes are there. So I have got to have somebody there with her to try and stop me doing that. “So why does she need help at night?” So I said, “Just because if she has a night terror she is going to need help, because she will be in pieces.” But as I say they look at her and quite calm and collected and all the rest and they don’t see that.

Then she tried for [name] University. That lasted I think two days. Because the learning support person they put in didn’t understand that she was needed at lunch times and break times and this is when this learning support decided to go off and do her own thing, so Nita was left vulnerable and she walked out of uni. I had to pick her up in the middle of the blinking A12. She was walking down the side of the road in tears and then she went to [name] University again to do a social work course. She got turned down for that. She didn’t pass the interview. As it happens it is a good thing because I don’t think Nita would have made a very good social worker, because she is too involved in her own particular difficulties.

 

Then she suddenly discovered at age 19, that she had a, 20 maybe, that she had a most wonderful flair for languages which came out of nowhere. She started learning Czech on her own and Russian, two of the most difficult languages you could possibly learn and eventually she decided that she wanted to do that for her life. So we got onto [university]. She went to [university] for an interview and did the whole interview in Czech, on her own. This is what she had learnt, she had learnt, apparently the Czech tutor there, said she had got herself up to A level Czech within six months on her own. So she has this wonderful facility. And she was also doing Russian. She was learning Russian then and she got in on the first, no problem, even though she didn’t technically have enough points, she got in on the interview.

 

Unfortunately [university] again, did not put in the support she needed, trained Asperger's support. She needed so many things, like the lecture notes written out for her or at least transcribed taped. She needed some, the very, very strong pastoral support but most of all, she needed the social support, someone who would get her an entrée into social groups and be able to facilitate her social communication. And I was told by [university], “Well we can’t make people like her. You can’t make people make like her, you can’t make people make friends with you.” And I said, “Yes, I understand that but, surely you can put her in… and have someone who can actually take her to these coffee groups and these lunch groups and she can just sit with them.” It never happened. And after six weeks, seven weeks may be of being totally isolated she was deeply, deeply depressed and by this time she was so stressed, her hair was actually falling out. You may have heard her mention a wig, she wears wigs now because she has lost about half her hair through stress. It is still going on now. And I had to take her out of [university]. In fact she left [university].

 

And I was really sad because adored the language. She adored everything she was learning but the social side was what totally let her down. You can imagine, you know that whole thing at university, getting to know people, going out and doing this and that. It is so much a part of the learning process. That was barred to her, from her. She didn’t have these choices. She was left on her own, wandering around campus, basically weeping. And that weeping just turned into anxiety, and then anxiety became fear, and then she became too fearful to go to lectures. So she stopped going. So the whole thing was compounded and the journey up to London was dreadful from home here, because she wouldn’t live in halls. Because she said, “If I live in halls or live in a flat I will be isolated. I will be lonely. And I will know that they are all going out down the pub. I won’t be asked and I will be left on my own and I will feel even more lonely.” And it is that aspect is awful… dragging loneliness.