College…. Choosing a course, choosing a college, living at home or in a dorm, shared flat? What about the support?? These questions can excite a family or start anxiety in others or even a bit of both. For our autistic youngest, now 19 having spent their gap year in a pandemic, it was definitely a bit of both. We are an autistic family, albeit not all formally diagnosed. We have experience in just how “unfriendly” many educational settings are for autistic people. It is what drove me to get a degree in autism while in my 40’s. It is what drove me to continue to work in the field of autism consultancy and training for over 16 years, to this day.
We, including my 19-year-old, the thought of attending college was both exciting and induced anxiety. My 19-year-old was having the worst experience as they deal with intense anxiety. This triggered their exposure anxiety as well ( “the excruciating sense of audience to one’s own existence”- Donna Williams). It started with online enrollment.
The application was easy enough as my 19-year-old knew the course they wanted to take. Fill out the application online, done. The acceptance letter came with the next steps. It gave an online username and password. Okay, this was going well. Then the page opened with 6 steps. There were the usual, proof of address, certificates from HS, ID with the date of birth and photo. Oh no. Is their passport up to date? They have no other picture ID. This alone causes extreme anxiety as my 19-year-old really really dislikes having their photo taken, and they are already at high anxiety…
Phew, the passport is sufficient, the anxiety decreases, and my 19-year-old continues on with the online enrollment. The next section is two tests. One is an English test, and one is a math test. The anxiety goes up again though I am deeply impressed to see my 19-year-old just go on and complete the tests. I certainly cannot say if my eldest was helping at all while in the room, but there were a few giggles. So the online enrolment is sent off completed. Again we are all thinking that the process has been easy.
See, we were unable to transition our autistic 19-year old into college as we had planned, obviously. Understanding them as well as what “strategies” work best, we know from experience that many visits to the educational setting are needed as well as clear communication of the rules and expectations. My 19 year old needs to know where they can go to “escape” all the blah blah, the barrage of social and sensory input. In the middle of a pandemic with social distancing and all the other measures put in place, this was going to be more detail than usual. But everything suddenly happened fast, and suddenly my 19 -year-old was facing a telephone interview and a two=day induction in a matter of days.
There was no time. There was no time to gather the necessary information from the college, who were at this point very accomodating. Suddenly, we are dropping our 19-year-old at college for their first day of induction. As I see them walk into the entrance, using hand sanitiser as they go and pulling up their mask, I have a thousand thoughts. Are they going to be okay? Should I have told them all of the rest of the things that might happen in an induction instead of only a few I knew would happen, thinking it could create more anxiety and a refussal to go? What if they freeze? What if someone is ignorant or even cruel to them? Will there be the learning support assistant they said would be there in class waiting? I never worry about my 19-year-old and their “behaviour”. I worry about how others will react and treat them. We have had years previously of how cruel, ignorant and neglectful those who should be the opposite, actually can be.
Back home, as my partner and I are working from home. Neither of us can work without always looking at our phones. We are hoping to not see any messages from our 19-year-old or the college. Hours go by, and we remark to each other how the 19-year-old’s day must be going “okay”. At about 1pm a text comes into my phone from the 19-year-old. they texted two words only at first…
Then the second text came. “I couldn’t handle it”. I didn’t ask any questions in my reply text. It said. “okay, we are on our way”. We hop in the car both agreeing that we were already satisfied with the length of time our 19-year-old managed. As we approach the entrance to the college, we see them. Head down, inconspicuous, they only look up when they recognise the car. I can see the anxiety drain away as they get into the car.
Much later that day, we found out how that induction day went. As my 19-year-old spoke, my heart swelled, but there was anger as well. Anger with myself because I should have pushed the college for details on the Induction days. Anger at what I personally consider vacuous tasks educational setting employ that is guaranteed to set off anxiety in many students but especially autistic ones. Tasks I also struggled with many years ago.
We found out that shortly after entering the college, they were all ushered into separate smaller groups based on the courses being taken. They sat and listened to someone talk about the college, areas in the college, covid restrictions as well as the rest of the usual administrative induction information. None of the real details sunk in and I doubted they stuck with many other students either. They were not given any student handbook or any written information.
The students in my 19-year-old’s group were ushed into another room and sat in front of a computer. This is when my 19-year-old found out that they were all going to be “assessed” again. They told me their anxiety was already almost at peak at this point, but they started the assessment. Two “tests”, one is an English one in math. People often assume, who don’t fully understand autism, that my 19-year-old is “great” at math because they are autistic. Believe me when I say that my 19 year old’s math skills are far superior to mine. I realised at 51 that I was autistic ( but that is for another time) and only a few years earlier that I have dyscalculia. So that also blows the autistic people are great at math crap.
I also need to point out here for those who do not know, many autistic people, my 19-year-old and myself to a degree included, process information differently and it can appear to take a bit longer than those not autistic. Understanding the written language can be challenging at times for my 19-year-old who often just needs someone to “translate” it for them. Giving them the information in a simple way, highlighting what the task is and the purpose or goal is all that is needed.
An adult was supporting all of the students. This person noticed my 19-year-old’s hesitation and although, not knowing my 19-year-old was triggered by saying “come on, you need to start”. They also misinterpreted the meaning behind my 19-year-old stating ” I can’t do this” which actually means, I don’t know how to start this. The supporting adult then replied ” well if you can’t do this, maybe you shouldn’t be here. maybe it is too much for you.” I could feel the anger growing as I was told this. Then my 19-year-old proved once again just how much of an insightful, thoughtful and considerate person they are. They continued ” But he didn’t know me and was a volunteer and a bit ignorant, so I couldn’t be mad at him. Plus he then helped me after looking at the question and saying Oh this is harder than I thought”. Ha! and some still try and say that autistic people can’t “put themselves in another’s shoes” and don’t understand that others have different thoughts, feelings, etc. to them.
My 19-year-old finished both “assessment” tests. This is an outstanding personal achievement as they struggled all of their school years with tests with the anxiety growing to the point where they would refuse to do the test regardless of the ability to not only complete it but score highly in them. It was the need to be perfect, to not get an answer wrong. My 19 year old would tell you this themselves if they knew you well enough. They would regret not attempting all tests they refused afterwards. So we were proud for them hearing they not only attempted but completed the assessment tests.
Then my 19-year-old told me that they were put into smaller groups, and my heart sank. I had a feeling I knew what was coming—the dreaded group task. Throw random people together and give them a pointless task that allows for the “assessors” to see into their personality, how well they manage as well as how well they work with each other and in a group. I knew that my 19-year-old’s anxiety must have virtually reached a peak again at this point. Again, I was so proud for them as they explained that although it was “stressful” they contributed and completed the group task.
It is what my 19-year-old told me next that took everything I had to keep control of my rollercoaster emotions. I literally feel the same emotions as my 19-year=old felt or is feeling. I have with both of my children since they were born. They had waited until all the other students had left and it was only a teacher he had been with all day and another person. That is when my fantastic 19-year-old overloaded. This didn’t take the form of previous ones in an educational setting such as hitting and kicking out, swearing, or walking out but rather my 19-year=old burst into tears.
My heart broke a little more. I knew the place they were in at that moment, exactly. For my 19-year-old with EA (exposure anxiety) to cry in front of people, they do not know meant that they had passed peak anxiety ultimately and had moved on to another different reaction/response. Releasing that anxiety in that way showed us and my 19-year-old that letting it out amongst people that care isn’t catastrophic as they had believed for so long. My 19-year-old was able to express that they had reached their limit and had to go. Again being able to communicate a need for someone with EA, when they feel like they are “on display” all the time, and that need highlights a personal aspect of them was a big step.
Thankfully, the teacher understood giving my 19-year-old the permission they sought to leave the induction day. My 19 year old explained to me that it was the culmination of the whole morning and then the thought of going into a busy lunch area and not knowing exactly where else on the college premises they could go; that was it. That was the proverbial straw. They could not stay. I think my 19-year-old was shocked a bit when we told them that we weren’t angry or disappointed but proud and impressed for them that they lasted in the induction as long as they had. We said that we thought our 19-year-old put enough pressure on themselves and we were not going to add to that. Plus, we added we had nothing to be angry or disappointed about, and we honestly didn’t.
That evening the anxiety my 19-year-old felt only abated briefly and then started to rise again. The second day of induction was “looming” for them. It quickly became apparent that my 19-year-old could not handle going into the second Induction day.
Negotiations with the college started that second induction day…. stay tuned for part 2…