Making it Through the Education System with face blindness and autism
This week’s episode of Our Voices focuses on Ben, a 17-year-old student who has face blindness and autism. Ben is currently preparing for his A-levels and is excited about the prospect of going to university.
He is fortunate to have a big sister, Ruth, who has been giving him advice on how best to prepare for the next potential phase of his life.
A supportive presence
Talking about his sister, Ben says: “She’s been a great supporter of me. And, for years, she was just someone who would support me and who would help me and a person I could talk to easily.”
Unable to recognise faces
Entering university is a great milestone in any young person’s life, but Ben is likely to have particular challenges. This is partially down to the fact that he has prosopagnosia, a condition more commonly known as face-blindness meaning he is unable to recognise faces.
“I have to recognise people through their voice or their hairstyle or by understanding the context where people will be at a certain time.”
Dealing with autism
He also has autism. “The best way for me to describe it is it means I think differently, and my brain is wired completely differently to anyone else. It’s a different way of living, a different way of seeing the world. And the reason why it’s a disability is because the world is not built for autistic people. It’s built for non autistic people.”
The challenges of face blindness and autism
Having both face blindness and autism has been a serious challenge for Ben. In some ways, however, it has given him advantages over other students. For example, he describes having a very good memory.
This was something which served him well when he passed his history exam with flying colours without even having to revise. Describing the benefits of how his mind works, Ben says “My brain works almost entirely on logic. I can see things pieced together fairly easily and think through things and analyse things very well as long as they are logical.”
Experiencing autistic meltdowns
Despite these advantages, at one stage, Ben’s parents feared that their son would not even be able to complete primary school. This was due to the challenging behaviour that would stem from the “autistic meltdowns” that Ben would experience.
These are intense physical and emotional responses people with autism can have which temporarily cause them to lose control when faced with overwhelming situations. “Those meltdowns would sometimes just be me lying on the floor and making a lot of noise. But a lot of time they involve lashing out and hurting people.
And the thing I want to make very clear is that, when I had a meltdown, it would not be me having behavioural issues or anything, it was me not knowing how to express my emotions, and I’d end up expressing them through physical means rather than verbally.”
Teachers often did not understand this, however, they did not have enough knowledge and experience in dealing with autism. They regarded Ben’s challenging behaviour as a form of active disobedience requiring punishment.
As a result, teachers would lock Ben inside a small classroom when he was having a meltdown, sometimes for as long as half an hour. He would be completely alone. “They thought that that calmed me down but actually all it did was make me more stressed, more anxious.”
On one particular occasion, Ben bit a teacher while having a meltdown and the teacher gave him some unsettling advice. “The TA said to me ‘Ben, don’t bite other people. If you need to bite something then bite yourself.’ And, in that sense, they were effectively telling me that self harming was better than having a meltdown. That stuck with me and that affected me [for] years afterwards where I would still sometimes bite myself if I was angry with myself and I was inflicting the pain from them onto myself.” What is particularly distressing is that all of this occurred with the teachers knowing that Ben had autism. But, despite being aware of his condition, they were completely unequipped to manage it.
A change in the environment
Ben joined a special educational school during his teenage year.s. This school was a perfect place for Ben to manage his face blindness and autism. During this time, rather than being punished for having meltdowns, Ben was encouraged to try to understand the factors which would cause them in the first place. Ben also received targeted help with academic areas that he was struggling with. One of these was reading comprehension.
“You wouldn’t think this, but reading comprehension is really difficult for autistic people because the questions are worded so that it’s very hard to understand them. For example, a question saying, ‘in this text, what is the author thinking?’ I don’t know… is the author thinking what they’re gonna have for lunch? I actually did say that a few times.”
They coached Ben to look out for “non-autistic friendly questions”. They supported him in developing strategies to deal with them They also helped him to understand and process his emotions more effectively.
“ If I ever had a meltdown, they would not only help me calm down, but then afterwards they would talk over with me what went wrong, and then what could be better next time. They did nothing to punish me or anything.” Unsurprisingly, this approach turned out to be much more beneficial than the response at Ben’s previous school.
Entering the world of politics despite having autism
In 2019, Ben entered the world of politics and joined the Liberal Democrats as a member. While talking to a friend, who was also a member of the party, it became apparent that none of the major UK parties had a policy on special needs education.
Ben’s experiences of making it through the education system with face blindness and autism led him to dedicating himself to writing his own Young Liberal’s policy, which was accepted by the party.
A powerful speech
As a consequence, Ben got the invitation to speak at the party’s annual conference. He describes his feelings while onstage.
“I have high anxiety and I was physically shaking, physically shivering, and I was letting all my emotions out to a roomful of probably about 60, 70, maybe 80 people.”
But Ben didn’t allow nerves to stop him and he ended up giving a speech that was so impactful that he got a standing ovation and won the award for best speech.
Improving the experiences of the future
Talking about the potential Ben sees for the future, he draws on his experience as a student with face blindness and autism and, now, as a political actor:
“we can now lobby, we can effectively call for change… We can also raise awareness about special needs education and call on our elected representatives to acknowledge the SEN crisis and make a difference. Hopefully people won’t have to go through what I’ve been through in the future.”