Advice needed

[scotkaz]

This will probably be a long post, so grab a coffee or a tea and sit back:) I really could do with some advice on something that happened today. I am really angry at what happened.

 

I will explain the background to it first.

 

My son aged 20 was very recently finally diagnosed with AS. He also suffers from depression and is on medication for this. He is still a very anxious lad in new situations.

 

Our doctor gave him a sick line in the middle of March for 6 months ( to begin with he said) while we waited on the diagnosis and due to the depression. His B12 was also very very low and he gets B12 injections which have helped some.

 

He was on the sick for a matter of weeks and got called in for one of the DSS medicals, which we attended and the doctor to be fair was pretty understanding.

 

A few weeks later, they called him back to do a review of his situation and tell them of the diagnosis. We got a nurse who was very helpful and was pretty knowledgeable on the difficulties he has. She sent us the report of what she has said and it was all very supportive that my son be given time to deal with his difficulties, and to be allowed to get the help he needs from NAS help and Prospects when he is ready and confident to do so.

 

We have not had the report on his diagnosis just yet as the person dealing with it all will not be back from holiday till August, but she came to the house to give us the diagnosis and explain it all.

 

I need to back track a little here. For many years I tried to get help for my son because he was so withdrawn and would not go out, stayed in his room and all the other stuff that had gone on for years. All this seemed to fall on deaf ears until he got to high school and to get there he needed to go on a bus. he did that once and then after that we had to take him and collect him. He has never been on a bus on his own ever since.

When he got to third year and began refusing more to go to school due to bullying and just hating school in general, except for drama, which he was always good at, they sent him to a small school with ten pupils only, because they felt he would cope with that better. To be fair he did cope and loved it for the few years he was there.

 

Once he left school he just slipped deeper and deeper into a depression and stayed in his bedroom almost 24/7 playing computer games and watching TV. We only saw him when he came down to collect his dinner plate or have one of his long long showers. We even had to send MSN messages or phone upstairs to him so he would come down for dinner.

No friends EVER came to the house not since he was about 6. And he never went anywhere at all.

 

Finally we got a letter to go to this place for help. When I got there I noticed that it was an Adult Learning Disability Centre. I wondered why we had been sent there and wondered even more when all I could see was profoundly physically and mentally disabled people there.

 

The doctor at this place took one look at him and asked why he was sent there? He spoke to my son and spoke to us and told us he does not have a learning disability. I told him I knew that, I already have a daughter with a mild learning disability and he is nothing like her. He referred him to the place we finally ended up at thank goodness.

 

One of the first things we where asked was if he had a learning disability and I said no he doesn't. The doctor we spoke to said she did not think he had one either but was only asking because it was on his records. I told her that he had never once been referred for any assessment for this. Apparently his quietness and difficulties at school had been put down to some sort of learning disability because that suited someone.

 

He got assessed and was diagnosed as I say with AS. On the day he was diagnosed the Dr made sure that she said to us that he most certainly does not have a learning disability.

We where told all the help we could access and one of the bits of help was to get my son out on the bus, so they applied for a bus pass for him and the psyc nurse will come out to see him weekly to help build up his confidence on getting about on his own.

We were also told about HELP at NAS and also Prospects to help get him into training and possibly work at a later date. We have the forms for HELP and cannot do anything about Prospects until August when the doctor gets back. Everyone has accepted this from the DSS until today that is.

 

My son got called in for a back to work interview. Back to work? he hasn't been out the door for years on his own but anyway we where told he must go or his money gets stopped. Remember he still is on the sick line he got in the middle of March.

 

So him and I went there today and we had Mrs Know it all sitting in front of us.

 

First question. Why are you claiming sick money? I answered because my son just cannot, he sits there with his hands in his mouth chewing his nails and his sleeve and gets more anxious by the minute.

I told her he was recently diagnosed with AS and is been treated for depression with meds and counselling.

 

Next question. Why did you not get him help before this? Yes you can imagine I wanted to smack her one. I explained I had tried to get help for my son since he was about 4 and was told he was just a brat.

 

She then asked him if he wanted to be independent and get out and about? he told her yes he does, that is why he is getting help now to learn how to do this.

 

So what type of work do you want to do she asked him. Vacant look and more chewing of fingers and sleeve, then I don't know he said.

He told her that he wanted to do drama. Do you go to any drama classes she asked? No he doesn't because he cannot go out and mix with strangers I told her again.

Well she tells us, it would help your self confidence but it is not a career, it should be a hobby.

Wonder how many famous folk that was said to.

 

So after explaining how it has affected him for so long she tells him that he needs to look on the job centre website and find jobs he would quite like to do and bring a big list to her so she can have an idea of how to get him a job.

 

I felt like screaming what part of he cannot yet go on a bus on his own to get to any job is it you are not understanding, but I said nothing.

 

She then said, so if you have AS then you must be good at either English or Maths. Do you like writing? He said no he did not. So you like numbers then? He said he was okay with them.

 

He told her he was good with a PC and gaming etc. She wanted to send him to college. He began stressing out again, I said the advice we have been given is that when he does go to work or college it has to be with lots of support, a quiet place and part time but first we have to get him able to travel on a bus to these places on his own.

 

Then she said, AS is a learning disability. I said no it is not. Yes it is she informed me. I told her my son does not have a learning disability. She went on a bit about that and told me it was and when I insisted no he did not have one, she said what does he have then. I said he has Aspergers and no he has no learning disability. Well what does it mean she asked, I told her a little but still she went on that it was a learning disability. By this time I had smoke coming out of my ears and my poor son was rocking back and forth and chewing furiously on his hands.

 

She then went on to explain to me that a learning disability was not just someone who had problems with reading and writing. I said I knew that but that my son did not have a learning disability.

 

She then began to tell me that my interpretation of someone with a learning disability is different to hers and that he has one because he cannot function properly or words to those effects and cannot learn.

 

Again I told her she was wrong, my son can and does learn, he can function in his own space, the problem he has is called AS which causes him to have the problems he has not a learning disability.

 

She then informs me that blind people have a learning disability because they cannot learn because they cannot see.

I told her she was talking nonsense, that they can learn their problem is they have no sight, they can think and learn.

 

Eventually she could see I was getting very angry and asked about his depression.

Did he get tests every 6 weeks due to being on anti depressants, and basically all he had to do was just keep pushing himself and not stay depressed.

 

Seems the office staff at the job centre have got hidden talents and know everything about all sorts of medical conditions.

 

She wants to see him again in September but I really cannot face her without wanting to slap her.

 

sorry for this being so long, I have been livid all day long due to this woman's attitude.

 

My son is now very anxious and he was just starting to come out of his shell a little there.

 

Is there anything I can do about this woman and about these back to work interviews?

 

 

 

 

 

 

[Tally]

Does it matter if the Job Centre want to categorise AS as a learning disability? If you're sitting there saying there is nothing wrong with your son, and then listing all these things he can't do because of his AS, it's a bit confusing.

[Kazzen161]

Is he on ESA? Whne my son was called to the Pathways to Work intrview, I told them my son would not be able to attend without me and would need to see someone who understood AS, and they postponed the interviews.

 

There should be a Disability Employment Advisor at the JC, who should understand AS more.

[Boy]

I do have a part time job (one and a half hours Mon - Fri) which I lucked into, pretty much (because I work with children and have minimal contact with the adults, and my mum works at the same place). This is helpful, because the people who I've seen so far for my ESA medical assessment/work focus interview, and the guy I see for my Pathways to Work interviews have all been quite willing to let me go at my own pace, even accepting that I may never work more than those hours, and also that if I lost my job I might be incapable of working elsewhere without a lot of support (and that I might not receive enough support to be able to cope).

 

However, my Pathways to Work adviser has also basically said that it's obvious just from being in the same room with me that finding suitable jobs would be incredibly difficult, and that the work I'm doing so far is fine. If I want to attempt an increase in hours, that's fine, but if not, that's fine, too.

 

I think a lot of it is luck in who you meet, as well, because I've had people with no knowledge of ASDs fob me off rather than admit their own ignorance, but my adviser knows nothing about ASDs and he frequently admits that he is a bit ignorant and says he'd love to learn more and that if he says or does anything wrong to let him know (for example, if he's upsetting me by confusing me by making jokes, etc., we can tell him and he will attempt to stop).

 

If you are having serious issues with this woman, perhaps you could request that you get to see someone else, preferably with knowledge of ASDs.

 

Funnily enough, I have in the past found myself (via advocates) trying to argue that I am someone with a learning difficulty (because, despite my IQ being too high to be classed as having one, I don't necessarily have 'relevant intelligence' (because I don't understand social things and how to interact with people) because when I needed to be referred to different services, they were passing me back and forth because they didn't know how to cater to someone with an ASD). Most people don't seem to know how to categorise ASDs (sometimes they seem to almost have a category of their very own, other times people are confused by whether to label it a 'mental health issue' or a 'learning disability', but it could have elements of neither, either, or both, depending on the autistic person! Especially in places where they are just ticking boxes (and so have to choose from certain options without being able to specify adequately).

[scotkaz]

Is he on ESA? Whne my son was called to the Pathways to Work intrview, I told them my son would not be able to attend without me and would need to see someone who understood AS, and they postponed the interviews.

 

There should be a Disability Employment Advisor at the JC, who should understand AS more.

 

Yes he is on ESA. Thank you very much for this advice, it is something I can see about.

 

Much appreciated.

[scotkaz]

Does it matter if the Job Centre want to categorise AS as a learning disability? If you're sitting there saying there is nothing wrong with your son, and then listing all these things he can't do because of his AS, it's a bit confusing.

 

It matters because of this woman's lack of understanding and attitude towards my son and myself. She started off with a know it all attitude and for someone who works in a job centre to think she knows the ins and outs of people's illnesses and disabilities when she is not qualified really put my back up today.

Every time I tried to explain something, she jumped down my throat with her opinion yet she did not have one report about my son on her desk. She was just generalising and that is not her job.

 

If my son gets the help he needs he will be able to go to work or college and get on with it well. It is just getting him to that point.

 

She really just got to me and perhaps I haven't explained it very well how she made us both feel.

 

I will do as Kazzen suggests.

 

 

[scotkaz]

 

I think a lot of it is luck in who you meet, as well, because I've had people with no knowledge of ASDs fob me off rather than admit their own ignorance, but my adviser knows nothing about ASDs and he frequently admits that he is a bit ignorant and says he'd love to learn more and that if he says or does anything wrong to let him know (for example, if he's upsetting me by confusing me by making jokes, etc., we can tell him and he will attempt to stop).

 

If you are having serious issues with this woman, perhaps you could request that you get to see someone else, preferably with knowledge of ASDs.

 

I think you said what I tried to say in my worked up state. Thank you for that.

 

You have been fortunate and so have we really, it is just this one woman. We are also very early into diagnosis, my son was only diagnosed a few weeks ago.

 

Well done on getting out to work:)