Published on 12, July, 2020
Any advice will be very much appreciated.
My son, who is in his second year of university, has been struggling with his university life. The staff's lack of knowledge of autism has harmed his mental health, which has clearly deteriorated, yet it is also frustrating that I am unable to engage directly with the university.
Does your son qualify for / has he applied for Disabled Students Allowance? DSA will fund a qualified mentor who can support your son. Most universities have a policy where a student can consent to a named person being contacted if there are welfare concerns - usually mental health etc.- which applies to all students. The Students Union will usually have an advisor who will advise students with a disability, and you have already mentioned the disability team. Confidentiality rules mean that course tutors and lecturers are not automatically informed if a student has a disability - some autistic students prefer it that way. If a student approaches a lecturer or tutor and says " I am autistic, I need ...{insert reasonable accommodation} " the staff member has a professional and legal responsibility to respond appropriately. Many universities have policies where neurodivergent students get more or less automatic extensions on submission dates etc., and a student may be "tagged" for late submissions without the lecturer knowing all the details about other support needs. Students need to be able to ask for support. I am currently mentoring an autistic student. I have advised him to tell his lecturer about the difficulty he is having with a groupwork task. He understands the theory behind the task, but he can't deal with the social complexity of being part of a project team and the "give and take" involved in sharing ideas, agreeing on a plan, doing a group presentation, etc.. I can understand that not all lecturers will be autism aware, and may see designing a [whatever] as a technical task and not appreciate how autism can affect the teamwork which NTs often take for granted. Unless the student tells the lecturer, the lecturer just sees a student who is "not a team player" and "not pulling his weight" in the team. Similarly, if the other students are not aware, they may feel the same.
One of the roles of the university is to equip students to work as a professionals in their chosen area. More emphasis is put on "soft skills" such as collaboration and communication, rather than just writing essays. The reality is that we need to meet the neurotypicals half-way. Yes, we are entitled to reasonable adjustments, but we also need to be able to self-advocate. NTs no more know what is like to be autistic than we truly know what it is like not to be, if that makes sense.
As an example, I was doing an autism awareness session for business leaders, and I got them to be quiet for ten seconds then say what they heard. People in the corridor. The coffee machine glugging. The sound from the next meeting room. The hum of the projector ... Then an autistic delegate explained that she could not "tune out" these noises, they were a constant distraction. Then we spoke about being autistic and "hot desking" with twenty other people in an open-plan office ... The point is, they were just not aware!
It sounds like some of your son's tutors need to be more autism aware. I suggest he talks to the disability advisor about mentoring, someone who will help him to self-advocate. We need to educate the NTs and explain what reasonable adjustments we need. I am sorry if this sounds harsh, but I am writing as an autistic person with ADHD and dyspraxia, who managed to survive "the system" and complete several postgraduate courses, and who is now a social worker, mentor and very part-time university tutor. I also failed, repeated and dropped out of courses along the way, and would have done a lot better had I been properly diagnosed fifty years ago when I took (and failed) my first degree. Stuff happens, treat it as a learning experience and move on.
Thank you so so much for your insightful advice and comments.
Everything you said made sense to me. I now understand why his academic staff treats my son the way they do; I didn't consider "confidentiality issues" - not all academic staff are informed that their student has autism - I assume they are unaware of my son's disability, as he is very reluctant to discuss his autism and mental health. I couldn't agree more that my son needs to be able to self-advocate and he should receive assistance for it. I hope he would gradually learn it while attending university.
His psychologist has advised him to re-evaluate and update his needs, as his mental health has deteriorated. It is likely that it will result in a formal meeting with relevant staff, such as the disability team, personal tutor, and course leader, and that he will have an opportunity to discuss key points he wishes to address, questions he wants to ask, and the outcomes he's seeking.
My son would like an idea of "automatic extension" - it will really reduce time pressure on him (which has been creating a very high level of stress for him, to the extent that it has started to impact on his mental health). This is something that he should request as a reasonable adjustment.
As a parent of an autistic adult, I've seen autistic individuals becoming increasingly empowered - they used to suffer quietly, but now, as you mentioned, they're more proactive and have begun teaching NTs. How encouraging!! Your students are very lucky to have you as their mentor.