Hannah Belcher, is the author of Aspertypical and is currently undertaking her PhD in Autism Spectrum Disorder (ASD)*. We were lucky enough to get the opportunity to ask her some questions about her research and her connection with Autism Spectrum Disorder
Could you tell us a bit about yourself?
I am 26 years old from Cambridge. I am currently studying autism spectrum disorders in women at Anglia Ruskin University. I write a blog called Aspertypical about my own ASD diagnosis and also my research. I enjoy taking photographs and doing computer art. I also enjoy books, psychology in general, films and music.
How has ASD affected your life as a student and do you feel the right services are in place for students with ASD?
My schooling was affected a lot by my ASD, mainly because all throughout my college years and university years (I did a degree in Psychology at the University of York), I had no idea I had autism. I had a lot of vague health problems, clearly caused by stress and also quite severe mental health difficulties.
I was given no support for this during my degree. I missed about 80% of my lectures, and was having to teach myself from textbooks and slides. I tend to get neglected and left alone because my grades are fine, so we’d have this unspoken rule that as long as my grades didn’t drop they’d stay away and not chuck me out. I once tried to seek a mentor but there was nothing available, and neither was there anything available in the NHS at the time.
I’ve had a completely different experience since I’ve been studying for my PhD, now I have a diagnosis. I have the right mentors and people in place and I attend a lot more. I’m not as ill as I was back then, so having less stress has really made a difference on my studies. The sort of problems I encounter now are just people not being aware of the difficulties faced by a female on the spectrum. There is not enough of a link between mental heath support and autism support. I am forever educating the people who work with me on what it is I need.
What inspired you to study this area of ASD?
I was inspired to study this area of autism based on my own diagnosis. Prior to this I was quite interested in evolutionary psychology. I couldn’t really find a direction to go in, but the diagnosis opened up a door for me. I had studied autism before and found it fascinating, I just need the motivation
Can you tell us what the studies are about and about what you’re hoping to find out?
I am looking at the misdiagnosis and the missed diagnosis of females on the spectrum. At the moment the research on autism is very biased towards males, because males appear to be affected more. However, at the lower end of the spectrum there is less of a gender gap than there is at the higher end of the spectrum, which suggest many females with high functioning autism or aspergers may be being missed or not quite meeting the threshold for diagnosis. They are less challenging at school, better social mimickers and Drs and professionals appear to see comorbid mental health difficulties first.
Currently we are conducting a nationwide screening for the disorder in the student population. We are going to look at the differences between males and females who score highly on the Autistim Spectrum Quotient and other screening tools, and whether females are better social mimickers or have been misdiagnosed. We want to identify how many females may have missed being diagnosed, and ultimately improve identification of females, so that they can get the support they need.
Having an undiagnosed disorder can have a huge impact on a person quality of life. Mental health issues are caused from the stress. If females were diagnosed at a correct age when they need the support hopefully this would not negatively impact their lives in such a way and they can reach their full potential.
Do you feel that current services are lacking or ill- equipped?
I think the current services are not just lacking or ill-equipped but non-existent. The NHS mental health system have promised pathways for adults with Autism Spectrum Disorders but this has yet to appear. The staff are generally not trained to work with individuals with ASD, and if they are then it is not very specific. For example I regularly see people working in the services who know what autism looks like in males but have no idea how to handle a female with ASD – that wasn’t mentioned on their day long course!
The problem is that you can’t help the comorbid problems with anxiety and depression in a person with ASD, without also addressing how the ASD interacts with that. Likewise you can’t be seen by someone specialising in Learning Disabilities who has no experience dealing with high functioning adults. So you are left in the abyss. The National Autism Society makes a great effort to try and bridge this gap, but more funding is needed and something more sturdy put in place. Your receive your diagnosis and then that is, there is no follow up support, you’re left to suss it out on your own.
What do you think about the work of independent organisations, like us, in helping to support and advocate for individuals and families with Autism Spectrum Disorder?
I think they’re great! They are so important because these problems are yet to reach the forefront of the government’s mind, so if these didn’t exist we really wouldn’t have anything. The NHS services could do with looking at these charitable organizations and their ideas really to get theirs right and make the support they give individuals with autism more appropriate.
Thank you so much for your time Hannah. If you would like to find out more about Hannah’s blog and learn more about her research click here. Find the Aspertypical page on facebook here and follow Aspertypical on Twitter here.
*For the purposes of this interview we’re using the term “ASD / Autistic Spectrum Disorder” to avoid confusion. We don’t usually refer to Autism Spectrum Condition (ASC) as “Autism Spectrum Disorder” or “ASD”. This isn’t because one term is better than the other, but we have found that our clients prefer the use of “Autistic Spectrum Condition” to describe their experience. The Autism Spectrum is part of who they are, not all that they are.