Paula Sanchez spent 18 years supporting adults in the criminal justice system before leaving her job to pursue a PhD program in autism. Both she and her son are on the autism spectrum, and she blogs about her experiences at https://autisticmotherland.com/. This week Paula shared her experience developing an autistic identity after 40 and how people can best support and advocate their loved ones on the spectrum.
Can you describe the PhD program you have begun? What are you studying? What are you hoping to accomplish on your educational journey?
I am only just starting my PhD, but I’m planning to carry out qualitative research exploring the experiences of autistic mums. More and more of us are getting diagnosed, often following the diagnosis of our children, but very little research has been done. I find it quite incredible that over 70 years ago Hans Asperger recognised similarities in the children he worked with and their mothers, and how well those mothers understood their children’s needs, but, despite so much autism research since, very little attention has been paid to our roles and experiences.
As well as developing my own research skills and contributing to our knowledge of autism, I hope that my research will challenge some of the of myths about autism, like the stereotypes around empathy and rigidity, as well as assumptions about autistic people forming and maintaining relationships. I am very keen to improve the understanding and practice of the various professionals we encounter as mums of autistic children. It’s very easy for us to be misinterpreted and misunderstood. One of my very first blog posts (“Could Do Better“) was written as a message to professionals working with autistic children and gave advice on how to improve practice.
Do you find the autism label identity-unifying in any way? In other words, do you feel connected to all people on the spectrum in some way? Are you able to identify with other autistic individuals who are very different from you? Or are some autistic people just too different?
I have found the diagnosis incredibly liberating, and it has enabled me to connect with people and make friends in a way that was never possible before. I think it can be unifying, and there are strong online communities which demonstrates this, but at times it can be easy to get stuck on your own experience and forget that other people experience things differently. I guess, like all people, I feel more connected to people who are like me, but that doesn’t stop me being interested in the lives and well-being of autistic people who are different to me.
Is there anything you wish your parents, teachers, and/or employers would have done differently for you that you believe would have helped you develop a positive autistic identity? (If not, can you describe what these people have done well that you found helpful?)
I didn’t get diagnosed until my mid-40s so I’ve had some catching up to do. I had been working for the same employer for about 17 years when I was diagnosed, and I think it was hard for some colleagues who’d known me for a long time to see me as an autistic person. I had been unconsciously masking my autism for so long, in a role which required complex communication skills, that I found it increasingly hard, post-diagnosis, to maintain the mask.
Diagnosis was like releasing a genie, playing havoc with my abilities to ‘perform normal’, which made being autistic increasingly difficult at work. It wasn’t that colleagues and my lovely manager weren’t kind and supportive, they were, it was more that I no longer fitted into the template of their expectations. I’d changed but everything else stayed the same. In the end, I found that I couldn’t carry on as I had before, and, with unsettling cultural and structural changes adding to my stresses, I ended up resigning to pursue my PhD.
You’ve identified ways to improve accessibility at a recent conference you attended. What other advice do you have for improving accessibility in other settings? This probably varies tremendously, so if it is difficult to speak generally, can you discuss a college campus as an example?
There do seem to be some things which have a fairly general application, for example, lots of autistic people struggle with sensory difficulties, crowds and the unexpected. Things like quiet sessions, quiet spaces to escape to and good information on websites can make a huge difference. For me, what helps most is detailed information on what to expect, what does a place look like, how do I get there and what facilities are available. Knowing that I can ask for extra help without being seen as a nuisance is important, as is the ability to communicate in different ways. I like to use email or texting as I find it almost impossible to ask for help verbally.
I find that people are often too vague and their instructions require interpreting, which adds to my stress. If I ask for detailed instructions I really do need lots of detail. I struggle to take clues from my surroundings and can easily get flustered and panicked.
I’m still in the very early stages of being back at university and finding my way around, both in terms of physical space and procedures and expectations. The campus is very busy but, thankfully, as a research student I don’t have to be there all the time and we have a discrete space for doctoral students, away from the hustle and bustle. Technology makes it potentially much easier to be an autistic student now than when I did my first degree, for example, many resources are available online and we have more ways available to communicate.
I find it difficult to process verbal information at times and arrangements have been made for me to receive transcripts, and I’m hopefully getting some software to help with this and with my sometimes erratic and time-consuming approach to studying!
What mistakes do neurotypical autism advocates make?
I think one of the hardest things to deal with is when non-autistic people assume that because they’ve read one book or attended one workshop, or know one autistic person, that they’re suddenly experts. A lot of us who are active online and who describe ourselves as autistic have had neurotypical people criticise us for using identity-first language, telling us we are people first and should not be defined by our autism. I find it bizarre that they think this is an ok thing to do, I don’t need reminding I’m a person, and my autism really does define me in so many ways, but I don’t consider that to be a bad thing. It’s ok for people to describe themselves in different ways, but it’s not ok for an outsider to challenge that and presume authority.
What’s the most important parenting advice you can offer for parents with children on the spectrum?
Don’t be sucked into thinking that you need to be doing loads of therapy and interventions, or that if you don’t you’ll miss some magic window of development. Our children’s developmental paths will be unique and our role as parents is to help smooth their paths, not force them onto a different route.
Support your child’s ability to say ‘no’, rather than encouraging compliance. The ability to say or indicate ‘no’ and developing (as much as possible) the skills to self-advocate will be crucial if we want them to be safe and supported in adulthood.
Teach skills not behaviours.
Encourage and model flexible thinking and problem solving.
Have fun!