Hi! This is a long one, so I can only apologise, but I am looking for some advice regarding being rejected for an assessment. I would like to add I am in Scotland, therefore right to choose is not an option.
To give some background, I am a 25 year old woman, and my dad and brother are both diagnosed with autism, my dad also has a brother who is diagnosed. My parents split up when I was very young, and throughout my childhood my dad faced an abundance of challenges due to being undiagnosed at the time and various other traumatic events, my mother was also violent to him and pushed him and his family out of my life, therefore I was not close to my dad for many years and did not know the family background. I was also subjected to neglect and abuse by my mother, and am no longer in contact with her, therefore sourcing people who can contribute to my childhood behaviours has been difficult.
I have received various different types of psychiatric treatment over the years, including different therapies and medication, none of which were particularly successful.
My mother used to always say I was “just like my dad” and it was one of the reasons she mistreated me. Since reconciling with him, we have discussed in depth how many similarities and challenges I share with both him and my younger brother. This lead to us questioning if I may also be autistic, as we were well aware it can run in families.
After spending the last few years researching everything I could about autism and having long discussions with my dad and brother about their experiences, I finally reached out to the GP for an assessment. The GP was supportive and I completed the AQ-10, which I scored high in, and compiled a document with a list of traits and challenges I have had since childhood, along with info regarding the genetic background. I was sent a follow up questionnaire from the local neurodevelopmental team, and filled it out as best as I could despite not having much info from my childhood.
From what my dad can remember of his time living with me in childhood, he could recount several instances of me having meltdowns over routines changing (e.g. him dropping me off at school instead of my mother when it was usually her who took me) and how he would watch me “arranging” things (e.g. lining up rocks in the garden, lining up toys).
I have an abundance of sensory issues, including;
-instances of vomiting because of food textures being “wrong” compared to how they’re supposed to be, and i cannot eat many foods due to their unpredictable nature texture wise.
-Sensitivity to sound which results in me having to cover my ears or remove myself from situations regularly.
-Extremely sensitive to touch and cannot stand people touching my skin as it feels agonising to me, like I am being rubbed with sandpaper.
I have also experienced an abundance of social difficulties throughout my life, which was particularly rough throughout primary school, as I could not bare speaking to people, would not speak unless spoken to and even then it was a hit or a miss.
I also misunderstood tasks in school a lot and would require further clarification regularly as I took things very literally resulting in mistakes, including several instances where I took writing topics far too literally and wrote essays on the entirely wrong thing, which was deeply embarrassing to me.
Along with all of this, I only had one friendship throughout the entirety of primary school, and it was not very consistent, with fall outs being a regular occurrence. My attendance was awful as I could not cope with the school environment for various different reasons, from the obvious social difficulties, to the pressure and expectation and also things such as seating plans unexpectedly changing and changes of teachers at the beginning of each new year.
By the beginning of high school I was extremely emotionally and psychologically exhausted with the world and trying to process and understand everything around me and began using drugs and alcohol to cope, beginning with alcohol around age 12 and drugs around 14. I also became addicted to opiates around the age of 16 or 17, as being “doped up” essentially was the only way I could cope with seemingly easy, basic human activities, such as going to school and appointments, and even just meeting up with friends, as even being around people I liked was uncomfortable for various reasons such as eye contact and being constantly aware of my body and not knowing whether I was saying or doing the “right” thing.
I was asked to leave school at age 15 with no qualifications due to my attendance, and have not lasted in any job longer than a few months without going into a severe state of depression and feeling extremely overwhelmed and trapped, because I cannot keep up or cope with the social aspect of workplaces, much preferring to work alone and be left alone, and I struggled to find a job like this, therefore I am now unemployed and have been for the past 6 years.
I have now lost every friendship I managed to make throughout my attempts at hiding my difficulties via drugs and alcohol and mimicking the behaviours and traits of others, and was often told by ex friends that I was too honest and harsh, despite not meaning to come across like this and often not realising I had done anything wrong until I was told, which in most cases was too late.
I have had lifelong repetitive physical behaviours since childhood, such as cracking my thumbs all day long, rocking back and forth, shaking my legs, rubbing my feet together. I have done each of these things, every day, pretty much all day unless I am in public and physically can’t, as far back as my memory goes.
I also have “rituals” I have done my whole life, such as eating each meal in an order that only makes sense to me, and I cannot do it any other way.
The reason I explain all of this, is because my assessment was rejected despite explaining all of these things as best as I could on the follow up form I was sent out after the AQ10. I am not saying I am autistic, and I did explain on the form that I have faced significant trauma which may contribute to at least some of my difficulties, however I have made an abundance of progress with said trauma and have in recent years overcame my opiate addiction and broke out of many, many unhealthy cycles that were implemented on me by my mother.
They sent me a letter in response to my questionnaire saying the only signs of autism they could see were emotional dysregulation and social difficulties, and reiterated that autism is categorised with these along with sensory issues and intense lifelong interests. I have had several, intense lifelong interests including;
-Music, I still to this day listen to the exact same songs on repeat all day long that I did back then, and can listen to the same song 30+ times in one day.
-Movies, which again, I can and do watch the same specific movies over and over again all day long, the exact same ones since childhood, it has never changed.
-An intense interest in perfume, cosmetics and fashion and the history of all three, I collect perfume and vintage makeup books and various other things in relation to this.
They did not mention any of the sensory difficulties I have, nor my special interests other than saying of my “interest in beauty” that it was perhaps just because I “wanted to be seen as perfect” as I told them I masked heavily in my teen years by covering up my appearance to fit in and forcing myself to conform to a certain beauty standard even if I did not personally like it, because I just wanted to be like other girls so I wouldn’t get bullied. My interest in the history of fashion, cosmetics and perfume is unrelated to this and I loved these things way before I started making myself look a certain way to fit in.
They stated that they looked at my records from baby-toddler years, and that my speech was regarded as developing slowly, I was noted as a fussy eater and had significant sleep issues during my developing years, but everything else was considered normal therefore they did not expand further.
They also did not mention the genetic background of my father and brothers diagnoses, my paternal grandmother also has ADHD which was noted on the form. I also gave my dad as a contact so he could provide him with more info, on what he could remember of my childhood as well as his family background, they did not contact him.
They stated they felt that my emotional and social difficulties were perhaps because of trauma and told me to attend the mental health team instead. Which I have, many times, for a decade now, which has 90% of the time been unsuccessful for me. The medications have not worked nor have the several rounds of CBT, exposure therapy and occupational therapy.
They also stated that they felt my need for routine and predictability was “personal preference” despite explaining that I have regularly had meltdowns and outbursts, often leading to self harm via hitting my head off of walls and such, over plans changing and details being left out. This has caused conflict with others and lead to ostracisation from peers several times throughout my life. I also explained it takes me weeks, even months to prepare for things like appointments and outings as it feels disruptive to my usual routines, doing something I don’t usually do every day, which causes me immense anxiety and can cause panic attacks and meltdowns. It felt quite insulting that they considered this a personal preference, especially considering I have physically harmed myself and been through significant distress due to such experiences. If it was a preference, I would prefer not to be that way, as it is painful to me and blatantly inconvenient to those around me.
Again, I am not saying I am autistic, I am not a doctor, but I feel like their dismissal of me may have been a bit unjust, and am feeling a bit at my wits end with it all. The reason I was seeking a diagnosis is because I have spent all of my life feeling different and being ostracised, and have not been able to get the education I deserve nor hold down employment, I feel like I have been allowed to fall through the cracks and now I am stuck on the outside of society. I was not necessarily seeking diagnosis for support from the NHS and such, as I know neurodivergent people are consistently failed in this department, but more so to allow me to access the accommodations I need to perhaps return to education or work. Has anyone else been or known anyone in a similar situation? Did you seek a second opinion and were successful? As I am unsure if it is worth trying to do anything about or just accepting the neurodevelopmental teams judgement. Thanks x
