Who are the "Lost Generation of Autism"?


I’ve lived a normal life, at least that's what I have portrayed externally. Inside my brain it’s been absolute chaos. The type of chaos that I would love to organise but can’t possibly. It's like a computer program with millions of lines of code that has grown organically and become out of hand and undocumented so that I no longer see the bigger picture. There’s too much going on and it’s going on all of the time. Sensory overload comes from thoughts, people, lights, sounds, physical sensations, etc.

If I was sat in a quiet, dark room with no distractions it may all stop. Then I would start to think clearly and my mind would start to race. I would think about things that just don’t matter in the slightest but I would think about them in great detail, over and over. I can infuriate myself with these thoughts.

I have never been able to sleep well at any point in my life! Even when I was prescribed temazepam by my GP I managed to stay awake throughout and my thoughts were even more repetative. The only time I get a good night's sleep is when I’ve not slept for so long that I just shut down or when I’ve drank enough alcohol to stop the thoughts. These are not dark thoughts, they are just random nonsense. Patterns, algorithms, wordplay, colours, sequences, swirling round and round.

The signs of autism were always there and as a child I was a quite a loner. I actually preferred to be on my own, I had my own world and it didn’t really need anyone else in it. I had ticks, twitches and stimming behaviours that other kids asked me about. I would open my mouth and then smash my right shoulder into my jaw banging my mouth shut with force. I guess it was hard for other kids to ignore that kind of behaviour. I also made unusual noises, grunting and clicking. I had no explanation for them, neither did the doctors. I was told they would pass, that I would grow out of them and I did to some extent but I also learned to hide them. I still stim to this day but I do it in a way that nobody will notice and to be honest I hadn't noticed myself how much I stim until I received my diagnosis and started to examine my masking behaviours.

As a child I had intense interests, some of which I still have today, and I preferred to communicate through art and drawing rather than writing. I hated speaking or reading out as my monotone voice had none of the rhythm and inflection that everyone else did so naturally. I had no explanation for why I felt so disconnected to the rest of the world during my childhood and adolescence.

I was a child in the 70’s and a diagnosis of autism simply wasn’t a thing then[1]. The DSM-3 manual wasn't introduced until 1980 and for the first time it listed specific criteria for a diagnosis of autism. It wasn’t revised until 1987 and by that time I was an adult. Autism didn’t become recognised as a spectrum, including Asperger’s Syndrome, until the DSM-4 was published in 1994. This means that I had no route to being diagnosed as a child. As an adult diagnosis was not an easy path either.

I was part of what is now being studied as the “lost generation of autism”[2]. A group of people who missed early diagnosis, hid their autistic traits and forced themselves to conform to the neurotypical world. My diagnosis didn’t happen until I was 52 and by then I had developed such deep masking techniques it was difficult to recognise them, even in myself.

The title of my blog comes from the 2015 paper for Lancet Psychiatry by Meng-Chuan Lai and Simon Baron-Cohen titled "Identifying the lost generation of adults with autism spectrum conditions". 

ABSTRACT:

First diagnosis in adulthood has finally become recognised as an important clinical issue due to the increasing awareness of autism, broadening of diagnostic criteria, and the introduction of the spectrum concept. Thus, the idea of a lost generation of people who were previously excluded from a diagnosis of classic autism has arisen. 

Making a first diagnosis of autism spectrum conditions in adults can be challenging for practical reasons (eg, no person to provide a developmental history), developmental reasons (eg, the acquisition of learnt or camouflaging strategies), and clinical reasons (eg, high frequency of co-occurring disorders). 

The diagnostic process includes referral, screening, interviews with informants and patients, and functional assessments. In delineating differential diagnoses, true comorbidities, and overlapping behaviour with other psychiatric diagnoses, particular attention should be paid to anxiety, depression, obsessive-compulsive disorder, psychosis, personality disorders, and other neurodevelopmental disorders. 

Possible misdiagnosis, especially in women, should be explored. The creation of supportive, accepting, and autism-friendly social and physical environments is important and requires a coordinated effort across agencies and needs support from government policies.

                                    

[1]https://www.spectrumnews.org/news/evolution-autism-diagnosis-explained/

[2] Lai MC,Baron-Cohen S. Identifying the lost generation of adults with autismspectrum conditions. Lancet Psychiatry. 2015 Nov;2(11):1013-27. doi:10.1016/S2215-0366(15)00277-1. PMID: 26544750.

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