I’ve noted before how I’m quite lucky for an autistic adult.
I’ve gained a degree, I’m in employment and enjoy my work. Despite the fact that I still struggle with socializing, I have a degree of upward mobility that makes that possible, if not easy. Its true that I’ve needed lots of help with each of these and without the support I received theres a fairly good chance I wouldn’t have got anywhere near where I am now. That said though, I recognize the privileges I’ve been granted, and especially since doing voluntary support work, I’ve come to appreciate them more.
I appreciate them as its quite shocking how many autistic individuals are not given the chance to become independent, not to mention those who are diagnosed later in life and end up wishing they could get those years of thier life when they went un-diagnosed back.
Whats been happening lately though is autistic people diagnosed as children in the 90s and early 2000s have been making the transition to adulthood, and the gaps in the support system are starting to show. Just 16% of autistic adults are in full time work. 79% of them say that with more help they would feel less isolated. This is leading at least one in three adults on the autism spectrum to suffer with mental health difficulties.
This is incredibly difficult to discuss, when most of the information about autism focuses purely on children. Theres some good research about the problems autistic adults face, but very little on what can be done to support them. This has lead some to describe the process of finishing high school as being comparable to a ‘cliff edge’.
In My Experience…
After the original course I was going to study at university was cancelled, I was able to find a route into uni which aided me in learning lots of the practical preparations which I would have definitely struggled even more with, had I not ended up doing a foundation year at Caerleon campus.
While the ‘specialist’ focus of uni means some autistic individuals get a lot from the experience, many end up dropping out – a problem compounded by a mental health crises where almost 9 in 10 students say they worry about isolation. In my first year in Cardiff, the support network I’d built up at Caerleon disappeared. This difference was highlighted through the kind of support I received. In Caerleon I had note-takers who acted as ‘buddies’, who would help and talk to me. When I bumped into one of them at Cardiff they explained how a change of rules meant that any extra support provided by said note-takers was now regarded as inappropriate, yet sympathized when I pointed out the obvious flaws. Throughout that year I spoke to barely anyone and barely left campus. I’d often use a form of ‘stimming’, that involved wandering the corridors, allowing me to get to grips with my emotions and the environment.
A lot of the problem here, is the obsession with independence leading universities to take a strict non-intervention approach. When I was at uni there were arguments between the student union and management about the funding of societies and communal spaces – something the uni were rather stringent on as ‘no student could possibly have any problems satisfying all thier needs in a capital city, right?’. Support exists for disabled students in the form of DSA, but only two in five know that the grant exists before starting thier course. Even those who do, often don’t apply either because doing so is hard or they don’t feel that they are ‘disabled enough’ to warrant support. Another form of help I received was mentoring, provided by the National Autistic Society. This gave me a sense of security in that I could confidently talk to my outreach worker about how I was feeling. Problem being, universities tend to treat these two elements as a placenta to remedying all the problems autistic students face.
I don’t want to make my university time out as terrible. In my second year I joined a rock music society through which I made friends, and developed confidence. That’s the same year I became involved in student radio, hosting shows on music and politics and started writing for outlets like Buzz mag, all of which allowed me to put my ‘special interests’ to good use, and start enjoying my time at uni again.
My next plunge into the abyss as it were came with everyone’s favourite life event of looking for a job. I don’t need to bore you with what a laborious process that can be. Just to say that my first interview was at HMV, and did not go at all well. I turned up wearing a suit, and froze after the question ‘give me an example of someone who you think provides good customer service’, realizing that I wasn’t at all prepared.
Even though I didn’t deserve that job, unconscious bias can happen in these process’. The ‘16% of autistics in full time work’ figure has remained static since 2007. Navigating the oftentimes awkward social encounter of the interview is difficult for a lot of autisitc people, and even getting to interview stage often features the challenge of networking. During my first interview, I remember struggling to make eye contact and making long pauses, which may have affected my chances, despite the fact that these signals were unintentional.
I discovered the Change 100 programme almost through a stroke of luck. Through that I was able to secure a placement in an organisation where I still work. In my first blog, I discuss how my answer to the interview question ‘what are you passionate about?’ focussed on combining my passion for truth in journalism, with my trait for being honest.
Despite encountering difficulties I realise my privileged position in comparison to some people on the autism spectrum. This next section casts doubt on the idea that people become ‘less autisitc’ as they get older, and seeks to explore how we can help autistic adults on the cliff edge…
Leaving Autism Behind?
You’d be surprised how common the narrative about ‘leaving autism’ is. I’ve even had it said to me by my elderly relatives that they ‘were’ autistic. The New York Times have a long read piece titled ‘the kids who beat autism’. As you’d imagine, I’m skeptical…
A lot of the ‘evidence’ for people losing thier autism is based off of case studies. One study by psychologist Deborah Fein , published in the Journal of Child Psychology identified 34 young people who had achieved a so-called ‘optimal outcome’ whereby they no longer met the criteria for being autisitc. So for example, they developed thier communication, facial recognition and language abilities to a neurotypical ‘standard’, as well as improving thier executive function – thier ability to process multiple stimuli at once.
Another study tracked progress in a group of 85 children they had monitored from the age of 2 through to 19. Of these, 8 no longer met the criteria for diagnoses by the end of the study, and required no extra support.
May I suggest however that considering both these studies were focussed on children, the results may be slightly clouded. That’s not to say the studies are entirely inaccurate. I’m willing to accept that among a minority, autistic traits may become less notable overtime. However, my reservation is that what looks like recovery might be learning to adapt to a neurotypical-majority world.
I don’t remember much of my childhood except feeling sensory overload. I’d frequently have panic attacks when I was on my own, loud environments like cinemas and events were often far too much for me to handle, and my communication with others was severely limited to the point where I just didn’t talk a lot of the time. You could look at me then and mistakenly say that I was ‘more autistic’.
However, as highlighted earlier, I still struggle with all those elements. I still flounder to interact on a person to person level, in a social environment, often resorting to repeating a series of leaned attributes which I know help to move a conversation forward. In loud, busy environments I can and do become overwhelmed. Still, I cope with them more often than not as I’m used to those situations, and can regulate my emotions. Whatsmore, I do not like being on my own, or being surrounded for periods of time, often switching between the two. So you understand, my emotional and sensory response to most stimulus is still heightened, yet I am helped through a series of coping and ‘masking’ abilities.
While theories about a literal ‘recovery’ from autism may not be widely believed, the idea that autistic people need less help as they mature, seems to be. The interacting which takes place in higher education, in public spaces or through work can take a serious toll on an autistic persons mental and even physical energy. Spending time alone acts as a means recuperate from that burnout. For that reason, I need the security of knowing that other people will understand when I’m quiet or uncooperative, because of an experience which has sapped my mental energy. Likewise, I do often need the comfort of having people to talk to and being around people who respect my differences, showing why education about autism is so important.
Even if, theoretically, autism were something that you could recover from, would you necessarily want to? To some autisitc people the answer to this question may be yes, but I’m not sure what a non-autistic version of myself would look like. By stripping me of my autism wouldn’t you also be taking away my special interests, and my unique view on the world?
A lot of the ‘evidence’ for losing autism is flimsy at best. Many of the people whose autism symptoms appear to subside still require extra support. A children’s evaluation centre in New York, found that 38 children diagnosed with autism over a 10 year period no longer met the diagnostic criteria, but still struggled with attention deficit issues, struggling to control thier mood and social anxiety. These showed up especially as they left childhood and began the difficult transition to adulthood.
Some parents interviewed in the New York Times article cited earlier called these “lingering” difficulties. And again, I’m not a scientist but may I suggest that while these people may have developed cognitively in such a way that dosent meet standard assessments of autism, should we really be saying that these people are not autistic anymore, if still display autistic traits? Indeed, the definition has widened in recent years to encompass ADD and to tie more of these traits under the ASD banner. If that means we can provide support to those who need help, I regard that as a positive.
“Autism colors every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person — and if it were possible, the person you’d have left would not be the same person you started with”Jim Sinclair, An Open Letter to parents of autistic children
An Atypical Perspective…
Support can be a pathway to independence: I don’t want to speak in absolutes. It might be the case that some people learn independence from a lack of support. However, things like mentoring, support networks, understandable language, and ‘buddies’ to accompany me in crowded and social environments have all been cornerstones in developing my independence. I’ve often lapsed into old routines of dependence when I didn’t have any support. Obviously support can and should be altered at different stages in a stages in a persons development but treating it as a form of ‘hand holding’ thats antithetical to achieving independence is neither accurate or useful.
Talk of ‘recovery’ from autism is unhelpful: We can talk about learning to live with or better understanding autism but the evidence of a literal recovery is not supported by brain scans, and the behavioral studies only show a diminishing in some of the traits necessary for a full diagnoses. I feel at least until we understand more about how autistic people often ‘camouflage’ thier autism to fit in, and about all the different symptoms, talk of recovery may serve to deny autisitc adults the help that they need, doing more harm than good. Instead, we should be seeking to broaden our understanding of autistic traits so that we can better support autistic individuals, both through childhood and into adulthood.
We don’t need to ‘recover’: The coping strategies and emotional growth that occurs within autistic people is largely positive, just as development is to be welcomed in any person. Of course, theres also the activity of camouflaging your autism, which expends a significant amount of mental energy – part of the answer to that is to build supportive societies and systems. Even if we knew that recovery from autism were possible I ask this…why is not being autistic more of an ‘optimal outcome’ than being an autistic person with a career, friends and a level of independence? Why would struggling with social cues and needing to retreat occasionally be more important than the fact that they can interpret complex data, create mesmerizing art, or tell you about nature? Shouldn’t we be striving to make autistic people happy and successful, seeing autism as an asset rather than an Achilles heel?