Very difficult issues, linked to carers

My help hasnt been that positive an experience either. I constantly feel like people are belittling me, it is almost like asking for help from a lecturer and being told "we have too many dyslexics to explain this to you". I will begin with how it went after I had been diagnosed with Asperger Syndrome about a year ago(or similar time line). I was diagnosed late as the schools were too busy sending the bullied to anger management, and the bullies on weekend trips, funded by the schools.

The very person who was required to put through reports to help me get a therapist, later turned around and accused me of hacking the educational facility, simply because the administration staff(Whom I thank dearly for having helped me countless times when in desperation) helped me book rooms when they had failed countless times. This showed incompetence, as well as stereotyping. The stereotype of someone with aspergers is currently matching Gary Mckinnon, someone who has aspergers but no clue about ethics. This was clearly just to pre-mentioned stereotype as I had not said any word with connotations towards such acts. The reason this was so bad is due to the fact they called my mobile phone instead of emailing me, the night before an exam. This meant that it was not monitored, and I could not prove the topic of the conversation. This was clearly from malice, as if they wanted to receive some sort of confession, they would have used a media of communication which was logged so that it would not be 'hear-say'. Had I issues regarding the therapists I would have to have contacted this person. Not exactly peice of mind to move onwards.

Next was the first therapist, we will call her miss leafletBinder. Miss leafletBinder failed to understand anything I said. All she did was pick out any nouns, or stereotypical phrases, even if they were not even linked to what I was saying. Her next action was open her binder and say "I think I have a leaflet for x" where x is something completely unrelated to the issue at hand. The second meeting with her, most likely due to me asking her if she knew anything but how to hand out leaflets, was to introduce me to a new therapist. I was partly please of meetign the new therapist, as at least the new therapist did not carry a binder everywhere.

Now I think this is a good point to express that one of the comorbids of Aspergers includes extreme frustration and irritability of pointlessness. If you were to take 5 sentences, or slow your speech to 'clarify' then it will irritate me exponentially. The new therapist does this for every single meeting the entire time. They end up changing their sentence half way through, switchign around adjectives even to change the meaning of the sentence once I have already processed it.

Lets call this new therapist Technophobe. She started off fine. Just asking how things had been and suggesting courses of action for any issues that had arrisen in a professional manner. Then after not long she stopped listening. The issues were not re-occuring to have annoyed them, in fact I had began to open up after seeing them manage to deal with the other issues in appropriate manner. I told them I was stressed out and struggling to focus due to such, and had began drinking coffee to try and solve the issue. I also stated the ways it helped, and also the reasoning behind it working*. They pretty much brushed it to a side saying 'we will look at that next week, I will see what I can find online regarding it'.

Being experienced in computing, clearly my first line of action when an issue I cannot solve alone occurs is to research and scour forums for people who have overcome the issue and have detailed the sources that helped them. The stress was mostly caused by the intensity of work I had been given in a shrot time, and my lack of understanding of what was required by the lecturers**. By the next week, the work was handed in. Due to not having had the help I had to stay up for 3 days straight without sleep, even working in the toilet after too much caffeine. Yet I had went to speak to one of the lecturers, who had not given me work, he read them through with me putting them in terms I could understand.

So come next week, absolutely no stress, making any efforts in vain due to no way to test the ideology of techniques. Also all they said bubbled down to 'take it easy and take plenty breaks'. Breaks frustrate me, and taking it easy will stop me from getting a degree thanks. This made me completely lose faith in the idea of asking them for help on the main issue I have, anxiety. I don't think it is even recorded*** that I have anxiety issues. I decided at this point, as there was no where to turn, and due to the main 'condition', I felt it was impossible to express any of this socialy due to mild social anxiety, which is getting worse every week because of not having any help.

I gave them the benefit of the doubt, as it is all I could do. Also there is no way in which I could contact the managers etc, as I always feel like the therapists are trying to say 'theres nothing wrong with you anyway' every 5 minutes... even though I was formally diagnosed, after being told by someoe who knows me better than I know my self to get checked for it. So it would be impossible to try to explain to the therapist any of this, also impossible to ask someone else to tell them.

So far we have lack of help at all, now for the interesting part. After I had taken some exams and a family member was diagnosed with heart issues, I was asked about how I think I did. I said I did not know and do not like talking about it as discussing something that stresses me out will not be useful when I need to wait a month for the resutls, minimum. They pressed on asking a total of 5 times before understanding, that the reason I repeated myself about nto liking it every time, and explicitly stating I did not wish to discuss it. They got the idea, until the next meeting.

They then attempt to arrange a meeting between me and another client so I can give them some support on how to get passed bullying, as I was also a victim at his age. I am happy with that, a new freind, who would actually understand what I am going through, perfect. Now let us burst that bubble, they forgot to mention that the other client was too nervous to meet new people. This would be ok, had she tried to arrange it in a quiet place that is usually empty, like a small cafe in a small town that barely anyone goes to. Yet instead they want the meeting to be in a busy bar that serves meals, between 1pm and 2pm. I told them the closest I would agree to is a coffee shop so I can have caffeine to deal with the crowds. Yet alas, he is busy apart from one specific time, during which I am in class. When she has a copy of my timetable, and should also have his so she can plan out the meeting times in advance.

Now we meet in a coffee shop, I take my girlfreind to help me cope better because I was nervous, and also took my macbook air to retreat into when I got anxious. Now a few weeks previous I specify that a member of my family has a heart condition that they cannot diagnose due to the poor testing methods, even when told multiple times. I specify it is private to the point I do not want it on record... yet she feels welcome to talk about it publicly in a busy coffee shop when I was clearly already anxious as she had needed to get my girlfreind to get my attention due to me having retreated to my macbook to program.

Due to the above I do nto feel like actually telling them anything important, as it will be publicly available. It is to the point I have began to develop some OCD about my teeth that I am always worried of them falling out, and think that the gum is receding, even though my girlfreind pointed out there is absolutely no change.

I am currently weighing up my options of going to see the first person mentioned's peer, who has equal authority, but due to the second therapist having a freindly personality I can not say wrong about them without stating their personality is good, kind of making every point I make sound void. Further, they will assume I am crying for attention and state that it is all nothing, as I find most people who are not on the spectrum hear what they want to hear, to the point unless you shock them then you are ignored.

What a fucking mess!
Should I, or should I not, go to the first person's peer?
Going to see my best freind tonight to discuss it to get his opinion on what to do as he has aspergers as well.

* Caffeine allows me to deal with changes to routine by making it appear to have been more gradual than it is, also by giving me energy to avoid feeling so stressed out and tired.
** I cannot read anything with tones, as I will take everything as offensive sarcastic, or plain literal, due to having minor paranoia I always see it as the negative.
*** Signs of anxiety in people with aspergers are almost impossible to spot unless you are a specialist.
  • Apologies BlackHatMentor if I read your situation wrongly. I was commenting more generally on the problems facing universities, which I guess is one of my obsessions.

    People on the spectrum are being encouraged to go to university. It is perceived (mostly but not altogether rightly) that university education will provide more opportunities and provide greater life fulfilment.

    However there are issues that need addressing. One is that universities cater for adults (in autism terms at or just after transition). The university enrolment is a contract with that adult, not with their parents or anyone else. It is seldom realised that parents cannot ask about progress without the student's consent, and in the case of teaching staff, authorisation from Division heads or deans. Likewise we cannot ask parents for advice. So we often have to deal directly with the student, based on what the student tells us about their circumstances. Often support services get more information than the teachers. However the teaching staff have the most contact hours with the student both directly, and indirectly when marking coursework.

    A second issue is numbers passing through. Most mainstream schools see large numbers of pupils on the spectrum, and should build up experience (some public schools, and fee paying schools in Scotland don't see many autistic pupils for complex reasons). In Universities the numbers of disclosed students on the spectrum are small, so it is taking longer to build up experience.

    People on the spectrum have been going through universities for decades, mostly undiagnosed or at least unknown. I recall in my postgraduate days (1975-78) a student who learned the entire telephone directory off by heart but couldn't complete assignments. I guess he was on the spectrum. Let's face it, though I wonder if I really am aspergers, diagnosis notwithstanding), I went through two university degree courses undetected (though not without many problems).

    What is happening is non-disclosure. We sometimes know from the UCAS forms they have aspergers, but they don't notify support services or anyone else. I think a lot of people, wanting to appear 'normal', are keeping their autism status to themselves and trying to go through unaided, maybe telling their parents they have registered with support services. Universities cannot force anyone to disclose. 

    There are also issues about subject choice. An interest in an aspect of mathematics or an aspect of computer programming doesn't necessarily mean you can do a degree course, as you have to cover all the ground, not just what you enjoy.  This is especially important with pure maths or specialsed computing. So there is a need for special pre-enrolment advice to people on the spectrum which isn't there yet.

    Again it is an area that needs to be addressed.

    Hope things sort out well BlackHatMentor.

  • I went to the first person's supervisor, who contacted a NAS representative.

    I will be seeing a person for support starting this week, as they agree'd that it was unsuitable receiving no useful help, less time than they are beign paid for, as well as encouraging me to smoke and discriminate against auties.

    The university does offer the right support, and the errors were due to the NAS carer.... most likely an isolated instance.

    Do not claim wrong of the university when you don't even know the understand the intricacies(evident fro myour posts).

  • Rather worrying to find your university is not offering help to students on the spectrum. Are they taking the approach that if you are given support (eg facilitator or note taker and counsellors) or is it one of those universities as I explained above, that has gone for "accessible teaching"?

    There is a real problem getting round some of these "level playing field" approaches. They might work for someone in a wheelchair, or for students with dyslexia where the use of certain typefaces or paper colours and a bit of extra time in exams, and an information sheet tacked onto assignments about special needs might be sufficient. However for Aspergers there are key issues such as anxiety, coping with too much information, organisation and routine, or sensory overload.

    Universities cannot normally do one-to-one teaching. The general principle is for lectures to large or small numbers, seminars to manageable groups etc, but not one-to-one. This comes as quite a shock to some students on the spectrum who may have had some more individual teaching. However Universities should be making more use of counselling to help make up the difference.

    As a disability coordinator I primarily supported other staff to support students with disabilities. However occasionally I have worked closely with a student on the spectrum if warranted, and am currently doing so part-time in retirement. I've built up sufficient knowledge of what works and doesn't work, drawing a little (but not too much) on my own personal experiences of coping with aspergers.

    It is quite frightening how much this varies from university to university, which is why I think NAS (or HEFCE and NAS) should investigate this. The Russell Group used a firm of consultants to set up a disability scheme; newer universities had to make their own way with less professional input. The result has been very wide ranging provision.

    If we are to continue to encourage people with aspergers to go to University, we cannot just leave it at - make a go whatever provisions universities have made. I believe there is a need to push for fairer practices across universities.

    Meantime I am sorry to read about the difficulties you face. If a University takes you on as a student they should be pro-active in ensuring you have a reasonable chance of succeeding.

  • The person who diagnosed me stated in the recommendations that I should see a NAS councillor for the specific reasons stated above. The university does not offer help for aspies, all their help is geared towards NT's meaning when I am stressed from a high work load they will suggest having a drink(downer) where I need uppers(nicotine or caffeine).

  • Forgive me if I've got this wrong, but your issues seem largely about support available in Universities. I believe most universities have some grasp of various manifestations of aspergers/autistic spectrum, and am under the impression most use NAS counsellors (NAS could confirm). So I am concerned at the sorts of things you are describing here.  It is difficult to assess what different universities are doing however, because it depends on what is stated on their websites, and whether they abide by what they say.

    Could NAS do a survey of Universities to find out more? Or work with HEFCE's disabillity initiatives to achieve this?

    There is sometimes a split between support services providing helpers/facilitators and the degree to which teaching staff are involved. Although I only do a little lecturing since retiring ast August, I'm painfully aware of the limitations of both how assignments are worded, and how I explain assignments, because I know many students, not just those on the spectrum, have difficulty understanding what they are being asked to do. This despite measures to explain and develop skills, though equally the effectiveness of teaching methods may not yet be doing this effectively.

    One of the problems is the promotion of "accessible teaching" which means taking a wide range of disabilities into account in websites, powerpoint,handouts (font and coloured paper).  This does not take account of individual needs, and is exacerbated by the need for training on how to meet specific disability needs (and the timing of such training if it is months or years before the lecturer knows they have such a disabled person in a class.

    A lot of the disability philosophy is "level playingfield". You support the student supposedly to have an "equal chance" in lectures, tutorials, laboratories, seminars etc.  The support is supposed to enable the disabled person to have a same chance at doing assignments. So all disabled people have to do the same assignments as able students.

    This doesn't necessarily work for aspergers/ASD, particularly because of overload and anxiety issues.

    I've tried for years to break though these assumptions, but I'm one lecturer (and disability coordinator till retirement). It needs a lot more people to progress to any real conversion of the system.

  • I am pretty nervous, the meeting will be in a public place on monday(tomorrow).

    My best freind (also has aspergers) will acompany me to help me out explaining to 'technophobe' mentioned above, the issues which I am receiving absolutely no help for, and those that they are actively worsening.

    I am rather nervous due to social anxiety but also:

    • Carer actively belittles me and acts like having only mild, visible, comorbids means that I am there to do activities that are primarily for their gain at the expense of my studying.
    • Also they constantly change meeting times, at short notice, which is one of hte issues that I have with time management and I get confused for a day or two if there are changes like that, Not usefull at ALL during my bachelors year.
    • Often due to the carer, I take my girlfreind with me to help me, this leads to being completely ignored, to the point that the meeting tommorrow was arranged with my girlfreind and I thought it was tuesday, and in a different place.
    • Thay have encouraged me to start smoking to help my focus, while psychiatrists are telling me to drink 8 cups of coffee a day, triple esspresso's.
  • Forgot to add, that before I had a look through the ignorrant parents of this forum to find auties, due to the explanations given by the carers I was lead to beleive that auties were the same as aspergers but incapable of learning.

    I never voiced that before, and apologise to all for even having beleived it.