Sections within this post
- Introduction
- Diagnostic Report for Autism Spectrum Disorder (Condition)
- The diagnostic terms
- Diagnostic levels
- The assessment process
- My results
- Diagnostic criteria
- Persistent defects in social communication and social interaction
- Restricted or repetitive patterns of behaviours, interests or activities
- Sensory sensitivities, perceptions, time management and sleep
- Symptoms must be present in the early developmental period
- Symptoms present in education
- Symptoms present in employment
- Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning
- Differential diagnosis
- These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global development delay
- Conclusion
- What’s next
- Closing thoughts
- Post-diagnosis - processing the news
- To be continued…
For my first ever series of blog posts, it made sense to start from where it all began - with autism being a lifelong and present condition and all. I was diagnosed as an adult, into my third decade - so what was life like leading up to the diagnosis moment? What signs were present without me or anybody else knowing or noticing?
Diagnostic Report for Autism Spectrum Disorder (Condition)
Some weeks after receiving my diagnosis of Autism Spectrum Disorder (Condition) over the phone, I received a physical paper report in the post, the report being titled as this section is. The report document itself is 16 pages long, covering everything discussed in my 2.5 hour long assessment interview.
Without divulging every inch of my report, I will go through the key facts, whilst maintaining the original headers and subtitles from the document.
The report begins by thanking me for my patience and for going through the diagnostic process via Microsoft Teams. Then we have the following, as a direct quote:
“We are writing to you with confirmation that after our diagnostic assessment process, that you received a diagnosis of Autism Spectrum Disorder / Condition.”
The diagnostic terms
The report discusses wording of diagnoses and how the use of the term ‘disorder’ implies wrongness. A preference for the term ‘condition’ is justified as being better suited, as it implies difference instead of something with arguably negative connotations.
Diagnostic levels
The next section covers the three ‘levels’ of autism diagnosis - Level 1, Level 2 and Level 3. These levels are a replacement of the outdated ‘high / low functioning’ terms that were once commonplace. The levels indicate the support needs required by an autistic individual.
Whilst the report does not overtly state which ‘level’ of autism I ‘have / am’, based on the descriptors I would lie between Level 1 and Level 2 - for the most part, my closest counterparts help with the difficulties I face on a daily basis, but sometimes I feel that additional support would be helpful in my life, especially when it comes to executive functioning.
The assessment process
For my diagnosis, it consisted of “about 3 hours over two sessions to complete interviews and observations”, structured around the initial questionnaires I had completed. These are detailed further on into the report.
My results
Reason for assessment
As mentioned in a previous blog post, it was an acquaintance that planted the seed on my potential autism, and thus I mentioned this as part of my assessment reasoning. It was after such extensive personal research, reading books, blogs, and devouring YouTube videos on the experiences of different autistic people, that I came to the conclusion that it would be worth going through the rigmarole of assessment for diagnosis, especially in my late twenties / early thirties. There were many reasons why I wanted a diagnosis, but it was mostly for clarity and closure.
Family history
In this section, my family members and their potential autism was discussed - what was subsequently written in the report is not correct, however, as it claims a maternal cousin is diagnosed, but they have not actually been anywhere near through the process to be done so. The point in this section about traits being present in my closest relatives but without formal diagnosis is true, though - my dad especially.
Risks to mental health
It was noted in the report that I was “on time, dressed well, in a good mood, highly engaging” etc. and so for the outside observer, I was masking my perpetual depression pretty well. Whilst this section of the report refers to mental health, my general health was covered here too - such as migraine, current medications and other treatments. This was done to check I was not at any immediate risk to myself or others.
Current situation (as of time of diagnosis)
Here I was setting the scene over my living situation, career, and daily routine(s) including personal hygiene (meticulous as I hate feeling ‘dirty’). As of the time of diagnosis (during the pandemic), I highlighted how working from home had changed my life, in terms of benefitting my mental health and sensory issues. A few executive functioning issues were discussed, especially around my absolute resentment for any chore or task that I do not want to do.
Developing, maintaining and sustaining relationships
Setting social boundaries, being a ‘people pleaser’, and struggling to say ‘no’ to things were discussed - as well as how my mum was my social fixer. She would often resolve issues for me, stand up for me, speak on my behalf etc. whilst growing up. My dad was too alike me to do any of that kind of thing, though!
My special interests dominating conversation topics meant general relationship building with others was (and still is) difficult. However, despite this, I am very family-oriented and close to family members, for they had accepted me as is for all my life, intense special interest divulgences aside.
My current friendships were discussed, and let’s just say that I do not maintain or have any other friendships outside of family, so that discussion point dried up quickly. It is also a triggering topic for me, as I still feel incredibly lonely and isolated as a result. I am doing my best to integrate into my community more.
Diagnostic criteria
My autism assessment as a whole consisted of:
-
Adult Asperger Assessment Summary - including the Autism Questionnaire (AQ), the Empathy Quotient (EQ) and the Relatives Questionnaire (RQ). These were used by my diagnostic service as recommendation from the government.
-
Autism Diagnostic Interview (Revised) - another government-recommended assessment format, consisting of a semi-structured interview, but altered to reflect changes in diagnostic criteria.
The report confirms that “there are two main diagnostic criteria for a diagnosis of autism, and we found evidence that you met or exceeded both these criteria along with having sensory sensitivities”. These specifically are in the sections as follows (with some of the examples I gave as part of the assessment interview).
Persistent defects in social communication and social interaction
- Tend to talk about yourself / own interests and struggle to pay attention otherwise
- Difficulty in telling lies
- Hyperaware of eye contact
- Struggles with seeing things from another person’s perspective
- Prepare mental scripts to deal with particular social situations
Restricted or repetitive patterns of behaviours, interests or activities
- Stimming, both harmless and harmful types (to myself)
- Possessiveness over things I own, as well as collections of things
- Fixations on musicians, crafts, video games, and television shows (with multiple series)
- Nearly everything I do is within routines - there may also be subroutines within routines
Sensory sensitivities, perceptions, time management and sleep
- Sound, smells, textures and touch are my main sensory issues
- Struggles with balance and prone to stumbling
- Difficulties with temperature regulation and disdain for the feeling of sweating
Symptoms must be present in the early developmental period
Much like the above, behaviours and traits from my childhood were discussed and listed out in the report. Some examples include being bossy with other children and expecting everyone to be ‘well-behaved’ at all times, odd use of words / phrases, food needing to be separated on the plate or I would not eat it, and the ever-present clumsiness / coordination issues.
Symptoms present in education
This was split between how I was at school, and subsequently college and university. I struggled with the transition between new institutions and the increase in difficulty in the work as I moved up the education ladder. Also included in the report were the social difficulties I had when trying to relate with other students, and having a strong preference for being alone to recover from the rest of the day’s interactions and studies.
Symptoms present in employment
Going into my working life, most traits either persisted or altered with age, whilst still falling under the autism umbrella. It was struggles with managing my career and home life, as well as having time to dwell in the pandemic, that led to me seeking an autism diagnosis in the first place.
Working life is a mix of the actual work itself plus the social side - the latter still being a major source of difficulty for me in my adult years. Meetings feel like a mission - I do my damnedest to keep a low profile as being on the spot throws me off course and masking is incredibly draining. I cannot have my webcam on in virtual meetings so that others can see me, as my focus goes on how I am presenting myself to others in the call as opposed to the task at hand. Networking events are an absolute no-go (to my career detriment).
Being able to work from home was the biggest blessing - beyond the pandemic too. In the office, I am overstimulated and anxious about, again, being put on the spot to deal with things. However, at home, where I am most relaxed and in a controlled environment, I work a lot harder knowing the overstimulation and distractions are massively reduced.
Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning
This part summarises the previous sections regarding education and work life, but leans more into the social aspects. An interesting point from the report is:
“There appears to be an intellectual approach to manage social interactions… you are intellectually able to learn how to negotiate social and communication difficulties, but this takes extra processing time, and considerable effort from you.”
…which arguably, is the definition of masking! For the majority of people I interact with in life, the point is true, in that I have to expend a lot of energy to tone down my unfiltered spiel before it gets unleashed onto the unwilling victim in front of me. A mix of that and actively thinking ‘what face / statement is appropriate right now?’ or ‘is now the time to be empathetic?’. Sounds robotic, yes, but it just does not come naturally to me and so has to be actively thought out.
Differential diagnosis
What this section goes into is “whether or not your difficulties might be due to some other reason, before deciding on the diagnosis of autism”. It stresses that the ‘other reason’ can be substance use or from another medical illness. Despite a prior diagnosis of social anxiety and PMDD, “these diagnoses do not account for all the struggles you have experienced”.
These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global development delay
Much like the section above, the assessors were trying to rule out other possibilities that I could have / be other than autism. I do not have a prior diagnosis of an intellectual disability or global development delay, so again my autism diagnosis is justified in the eyes of the assessors.
Conclusion
This part is a summary of all the above - the definitive:
“I am satisfied that you meet all the criteria for a diagnosis of Autism Spectrum Condition - we have seen that your differences have been life-long”.
It discusses how my brain is “wired differently” and summarises in brief the areas of life where I thrive / have difficulty with. All in all, it helps me to see the diagnosis in a positive light, without ignoring that it comes with its challenges.
What’s next
…probably the worst bit of the report, as I should have been offered follow-up sessions, support pathways, plus a summary of the diagnostic report should have been sent to my doctors’ office - but none of which happened. In the time it took for me to start processing the diagnosis internally, I had forgot to chase up these things - which I regret, as now the diagnostic service I went with has ceased to exist and there have been difficult times since my diagnosis where support would have been beneficial to me.
Closing thoughts
I am mostly happy with the report itself - as it does explain in depth how autism affects me and evidences all the signs that suggest a diagnosis was necessary for me. There are numerous errors in the written versions of the anecdotes I gave, though, but for the most part it all rings true and feels like I was not misdiagnosed with Autism Spectrum Disorder (Condition). Of course, I did (and still do) feel a sense of ‘now what?’ after the process due to the lack of follow-up support and also the whole idea of telling others (or not doing so) about my ‘new’ diagnosis.
Post-diagnosis - processing the news
For the next blog post, and final one of this series of posts, I will discuss what happened after the report was received (and read over repeatedly), how I dealt with telling others about my autism diagnosis and how I processed it all myself.
This will lead us into present day - and the rest of the content on this blog going forward.
Thank you very much for reading this blog post. I appreciate you spending time here on my corner of the internet. Hopefully you got something out of reading the essay above.
Stay tuned for the next part in the series and be the first to read it by following me on the social media links, in the menu bar, to know exactly when new posts are published.
Until next time,
