Grab yourself a snack and a drink of your choice and buckle in for the longest blog post I have ever written!
(Just a slight disclaimer beforehand – I have included a brief history of my life below, obviously I could never include everything I struggle with sensory/autistic/mental health-wise and I have left some more private and personal struggles out, I’ve got to protect myself online and somethings will always be private).
I am going to start right from the beginning…
I have always had sensory issues, since I was little. As a baby I cried when I heard loud or unexpected noises like sneezes. I struggled with clothing and couldn’t tolerate anything tight and found it difficult to be cuddled.
At nursery I got along with everyone and joined in games with other children. I did avoid all forms of messy play and struggled when going to birthday parties (both my own and other children!!) I’d hate the attention and ended up retreating and crying. I was an extremely fussy eater and would only eat Spaghetti Bolognese exclusively for lunch and dinner.
I struggled a lot at primary school and my parents decided (when I was aged 8) to take me to a private educational psychologist to see what their thoughts were. As a result of this I was referred to an Occupational Therapist (OT) and I had sessions of occupational therapy over a number of weeks and throughout primary school. I continued to struggle through primary school but having OT sessions helped me to understand and desensitise myself to the world a tiny bit at a time.
And then: Secondary school creeped up on me. I’ve always been awful with change and transitioning between different parts of my life (moving house, going on holiday, having days off, etc). I wasn’t used to such a busy school environment and constantly having to navigate through huge crowds of children to get to and from classes. I used to see a home-school link worker once a week to discuss my struggles and regularly would just go up to the SENCO’s office during breaks and lunchtimes to sit in the quiet and cry due to overwhelm.
I became to old to have occupational therapy on the NHS and aged 16-18 I saw an OT privately because I was really struggling at school and sixth form/college.
I had an IEP (independent education plan) throughout primary and secondary school which allowed me to have 25% extra time in any exams I had to take due to my processing difficulties. I was also allowed to take my exams in a separate quiet room which did wonders for me as it was a much less stressful and quieter environment than an exam hall.
I somehow managed to get 11 GCSE’s A-C (although I had to retake maths GCSE three times!) and 3 A Levels in Media Studies, Graphic Design and Art graded A,B,C. I also managed to study an Art Foundation course and went on to study a BA Hons Graphic Design degree at a local university and graduated with First Class Honours. (In my first year at uni I was diagnosed with Dyslexia by a uni-wide testing initiative! I was able to have a dyslexia support tutor to help me throughout my uni course which was helpful).
Since I graduated in 2016 I’ve been a Graphic Designer in two companies (one was an agency but now I’m in-house).
So how did I start off the diagnosis process?
In June 2018 I was told by my therapist at the time that she strongly felt I had a lot of autistic traits and she urged me to go forward for a diagnosis if possible through my GP. My therapist felt unable to help/support me further due to these difficulties arising within therapy sessions.
- Went to my local doctors surgery and discussed wanting to go forward for a diagnosis. Didn’t really get anywhere.
- Went to local doctors surgery again and saw another doctor who was much more understanding. She agreed to refer me but pre-warned me that the wait time suggested was 9 months.
- I was placed on waiting list, letter came to confirm that in September 2018.
- I phoned after 9 months to see what the wait time was like and was told that in July and August 2018 there was a spike in people coming forward for diagnosis so there was a backlog of appointments they needed to get through, that’s why I had to wait longer.
- Waited 14 months in total and received a letter in October 2019 inviting me for an appointment in a months time.
- Booked appointment ASAP 🙂
- Paperwork came through alongside 5 questionnaires to fill out beforehand and to bring to the appointment with me.
- 3hr appointment was booked for Friday 8th November 2019 at 9.30am.
So after booking my appointment I decided that the sensible thing to do is to go into it very open minded (aka not pinning any hope on getting or not getting a diagnosis). I did get steadily more nervous the closer the day came, which I know was only natural. It did really help to speak to people on Instagram who are part of the lovely autistic community and offered so much help and support as to what they had experienced during the diagnosis journey.
List of questionnaires I filled out:
- Early childhood and development questionnaire (my mum filled out, written answers).
- About me, adulthood current struggles, etc (I filled out, written answers).
- Short sensory profile questionnaire (multiple choice, I filled out).
- Autism assessment questionnaire (multiple choice, one version I had to fill out, one version my mum had to fill out).
- NHS personal details and data consent forms.
The actual day of the assessment:
I was very nervous on the day but kept the feeling quite buried! I had an appointment at 9.30am on 8th November and travelled there with my mum.
I was in the waiting room for about 15 minutes as I got there early. There were lots of helpful leaflets dotted around the place for help with mental health and local support groups and helplines which I always think is good to see. At 9.30am my assessor came to meet me (I was worried she might shake my hand as an introduction but she didn’t so PHEW!)
I decided to have my mum present during my entire appointment. I gave consent to this, you have the option to bring someone with you and for them to pop in and out of your appointment depending on the questions being asked or for them to sit in and be incorporated into the questioning and discussions. Equally you don’t have to bring anyone in with you, but you’ll need to ask someone you’ve known you since you were a child to fill out some of the questionnaires beforehand.
It was a very intense 3 hours. The assessor, my mum and I spoke entirely about myself for the whole time which felt very odd! We discussed my life right from birth through to my childhood and eventual adulthood. The assessor explained it was important to be able to see and understand the possiblity of autism running throughout my life in order to give an autism diagnosis. The assessor typed up notes throughout my entire assessment (which she explained would be in a final report) and also regularly stopped my mum and I from talking over/past key things so she could go back and delve into them a bit deeper.
My assessor was really lovely and explained everything as clearly as she could – and was happy to go through things when I didn’t quite understand what she meant. If I am honest I cried (twice!) during our appointment and I didn’t feel at all silly or judged.
I had no idea if I was going to get a diagnosis at the end of the appointment or not and to be honest I was too focused trying to answer all the questions to think that far ahead.
So what is my diagnosis…?
My assessor said ‘Congratulations Emily, you have Autism’ which was the most amazing thing to hear. I think it shouldn’t ever be said to someone that ‘sorry you have autism’ but congratulations! Because it is a good thing to have a diagnosis of something finally and something to be glad of. I was really thankful to have such a considerate assessor.
I was also told by my assessor that I had something called Alexithymia:
Alexithymia is a subclinical phenomenon involving a lack of emotional awareness or, more specifically, difficulty in identifying and describing feelings and in distinguishing feelings from the bodily sensations of emotional arousal (Nemiah et al., 1976).
more info on this here
Back to the autism diagnosis: I am considered to be currently be at a Level 1 in terms of support. There are three levels of support that you are considered under when diagnosed.
Just before you read the information on each level below it’s worth just considering: my assessor made it very clear that you can shift through/between levels as your life changes (this is written into the final report too). For example your support level is very much dependent on things such as major changes in your life, mental health, etc they understand that people do not just sit in one level all their life. Also just to be clear I was told that they no longer give the diagnosis of Aspergers.
The level description below are taken from here
Level 1: Requiring support
A person with level 1 autism may have difficulties in social situations. Level 1 is the least severe autism diagnosis. People in this category have social difficulties that require some support.
They can find it difficult to initiate conversations with others and may respond inappropriately or lose interest quickly. As a result, it can be challenging for them to make friends, especially without the right support. People with level 1 autism may also show inflexible behaviours. It can be difficult for them to cope with changing situations or contexts, such as new environments. They may need help with organisation and planning.
Level 2: Requiring substantial support
People in this category need more support than those with a level 1 diagnosis. They have more severe social deficits that make holding a conversation very challenging. Even with support, they may struggle to communicate coherently and are more likely to respond inappropriately to others.They may speak in short sentences or only discuss very specific topics. These individuals also have issues with nonverbal communication and might display behaviours such as facing away from the person with whom they are communicating. People with a level 2 diagnosis may also have inflexible behaviours that can interfere with daily functioning. They typically do not cope very well with changes, which can cause them significant distress.
Level 3: Requiring very substantial support
Level 3 is the most severe autism diagnosis. People with a level 3 diagnosis have significant impairments in their verbal and nonverbal communication.They will often avoid interactions with others, but they may interact in a limited way if they must respond to others or communicate a need.Their behaviours are highly inflexible and repetitive. They may react strongly to changes and become highly distressed in a situation that requires them to alter their focus or task.
After she told me my diagnosis I was wondering what would happen to all my questionnaires I filled out and gave to her at the start of the appointment. She explained and I did not realise that these would just be supporting evidence and that they are marked after the appointment and included in the final report. The actual diagnosis I was given was purely based upon the assessors own understanding/opinion she built on me throughout the appointment. Also any old supporting paperwork I gave her to read through (old OT reports, mental health assessments, etc) helped her further. This was actually quite refreshing as my diagnosis was not based on just questionnaires but the actual in-depth discussions throughout the entire appointment and her own professional opinion.
So what happens after diagnosis?
My diagnosis and report will be run past a head autism specialist and clinical psychologist. I have to wait 6-8 weeks for a full written report and my diagnosis paperwork to be sent to me. The report will include everything discussed during my appointment and specific recommendations for me as well as local support groups.
My assessor also explained that the paperwork I get through will have one specific sort of covering sheet that I can give to my employers that will explain my autism diagnosis to them without having to attach my full written report (which is very personal and private to me) which was good to know. I am yet to decided whether I will let me employer know about my difficulties, it might be something I go on to discuss in a separate blog post though. She also told me that having a diagnosis/confirmed assessment of Autism now entitles me to have a social care assessment should I feel the need.(although we both agreed I wouldn’t need/benefit from this).
I feel very grateful for the opportunity to have an autism assessment at the age of 25. It was a really big thing for me and I honestly feel like I finally have some closure. I am able to say ‘I’m autistic’ and it just sums up all my difficulties into one understandable label/saying which is really important to me. For so long I have been unable to summarise my difficulties quickly, always having to delve into the specifics of my sensory problems and social struggles.
I would like to thank my family for their support, particularly my mum. She has always stood up for me and really does know me and my difficulties the best (you could say she’s a specialist in ‘all things Emily-related’). I would also like to thank Michael for his support throughout 🙂
I like to be honest and genuine (on here and on my social media platforms) about my life as a sensory-being and now as an autistic person. I do hope that this comes across.
Thank you for reading my post and as always I am happy to respond to comments, DM’s and emails with any questions you might have.
Also why not check out Episode 16 of my 21andsensory podcast discussing my journey to my diagnosis here.