Hi! My name is Charlie and over the Christmas period I was assessed for Autism after a few months of pushing.
My family would say I've been searching for a label for a long time. I'm not content to accept that I feel different without understanding why that is. The process started in March/April 2018, admittedly I was still ill with glandular fever, but I watched the Are You Autistic? documentary on catch up and found myself crying my eyes out in the middle of the night. In particular, there was a woman diagnosed with Aspergers who I related strongly to, and I had a strong reaction to the section about women and social masking. I had been doing some research on and off after some of my behaviours led to tension and I wanted to know if anyone else experienced them. This usually consisted of articles, blog posts, official websites, and Ted talks and other videos. A lot of it just rang true I guess. When I took the AQ test I consistently came up with scores from around 31-33. So I went to my GP.
A few months of struggles and chasing later and in November I was in my first meeting regarding the assessment. They even wanted me back for a second session.
In early February this year I got the results of that assessment. I was told I was not on the spectrum according to their criteria. In the long report they gave me they mentioned that some of my traits could be related to Social Anxiety Disorder instead. But along with that 'no' they still told me I had many traits. I simply didn't have quite enough to warrant an official diagnosis. My family are very willing to accept this and any decision I make regarding it but personally I am very conflicted. I am aware of the danger of seeking second opinions until I hear what I want to hear, but to me the fact that I can still have many traits and react so strongly feels odd. It seems like I've gone from just over the bar to just under it. Part of me knows that's possible but part of me is also sceptical about it.
I feel it worth noting somewhere in here that some time after my first assessment I met someone who is now my partner. He was surprised to hear my concerns but also understood the traits I described and the concept of social masking. But he also did say I didn't seem like others he's met who are on the spectrum. (Another note, a friend of mine when I was about 12 had a younger brother with Aspergers. The friendship broke down in part because I would get along so much better with him than with her, and this is extremely unusual for me. I also have a younger cousin about 6 who is also currently being assessed. I got on with her extremely well, better than the cousins on the other side. Not diagnostic I know, but very interesting I feel.)
I was wondering if anyone had any comments or advice regarding this as I don't have many people to go to. The few people that I have spoken to outside of my family also think its a strange thing to be told and would encourage me to get a second opinion. One even suggested that if I do relate strongly then maybe I should take my own gut feeling over 'not quite making the grade'.
There do seem to be cases of people, especially women, being misdiagnosed dud to masking.
The way my assessor explained it to me is to be autistic you need to have traits in 4 different categories and they need to have been present from a young age. If not, it is likely not to do with autism. The 4 categories are communication, social, sensory and rigidity of thought. It may help you to make a list of traits you have and see if you have traits from all 4 categories. If you do and some of them have been present since childhood, then it may be worth seeking a second opinion.
Hope that helps.
You are obviously at an age where as you are "growing up into being a responsible adult" for want of better words, that in itself can be frightening, because we are becoming living in a world of diverging inequalities, like myself 65 years ago, leaving school at 16 and worked for several years and then doing compulsory military service. I too embarked on further education at the same age as yourself. So with luck you can look forward to having Problems of life to tackle and trying to overcoming them for the next 65 years , I know I will be so fortunate.
You describe yourself as getting along with other people, and of friendships. You write of your partner who apparently perceives you as normal.
You even seem to be able to understand why another person is saddened.
You, in my view as the parent of a 36 yr old severely autistic son, are not autistic, although I fully understand you are confused, and your searches to quite an in depth level, such as Ted Talks. for their opinion, whereas at my age having experience life I have my opinion, and if I come across something like the Comment" Ted Talks" I simply google it, remember what it was about and move on.
You have your studies to do to A level forget about all the other problems having a badge saying you are autistic will not affect the work you have to do.
However if you have a certified medical report, I suggest as a one time Student leader that you seek out, your college Student Union, and their welfare officer contacts , because their is a possible chance that your medical problems may be taken into account with the grading of your exams, should they be borderline.
Failing that You can make evquirio the examining body for your exams, but it's better for others who may have a recognised procedure to help you.
I work in an HE institution were we assess many students for autism. We found that if we sent female students to a certain assessor they came back as having social anxiety disorder and if we had the re-assessed with another assessor they were diagnosed as autistic. If you came back as having significant traits it seems sensible to ask for a second opinion.
I feel like maybe I should clarify; I am currently 23 and female.
I did initially go to college at 16 but I had a breakdown a few weeks in. I'd been forced onto a course I wasn't interested in and eventually I was crying my eyes out in the town centre because I knew I wouldn't be able to do it. I've suffered with depression since before then but it wasn't picked up on.
You have a medical diagnosis, get a second opinion and try to get that registered in some way with the College or examining body as perhaps a mitigating factor if you are a borderline case for your grades. You intend to pass you exams - ignore other people and their opinions, because that is what an autistic person would do.
NAS38972 as a parent of a severely autistic son, it comes across as though your a knowledge in that area but your understanding of higher functioning adults and especially autism in women is lacking.
Many autistic women have friends but how they interact with these friends and the stress caused by interacting with these people is key. When I was younger I hung around in groups but found this to be so overwhelming that I coped by taking illegal drugs. At 34, if I'm in a group of more than 4 people (including me) I go in on myself and struggle to interact. Some of this is to do with how I process information as the conversation has often moved on before I have something to say. As I've gotten older and find the social demands of work exhausting I now only have one close friend and see her about every six weeks. This relationship and having a partner is all of the social interaction I need, where NT tend to crave more.
Autistic women spend a lot of time analysing others, which makes it easy to understand why people are acting the way they are. A key trait of autism is that many women do not know how to intrinsically respond and have copy what others have done in these situations in the past in order to appear 'normal'.
charliedena mental ill health such as depression is another key indicator of undiagnosed autism. I regularly experienced depression before my diagnosis as I found the world to be challenging, plus I always knew I was different but didn't know why. Autistic people can struggle to regulate their emotions, as well as experiencing extreme emotions. This could explain why you ended up in town haing a 'meltdown'
Further Suffering from depression is more common than You think.
I had My own business I started 47 years ago, I worked to my limits nation wide for years at great financial risk to my family,
My success was resented one of my clients representatives, who unknown to me ie. surreptitiously would send a false and malicious report to any future clients when. When I referred to them as a reference.
This had the effect of making me work harder and harder to keep my business going while being unaware of the Poison. When I found out 5 years later by accident, I was suffering from work exhaustion and depression. and my other clients had dried up.
I had to lay off the team of Men I Carried wherever I worked, and laid my equipment that had cost me then the value of at least half a dozen houses at the time. I had invested in, Most of this equipment has since rusted away and scrapped..
At at the time I had hoped to recover to start again. After 16 years recovering. I had to move my equipment from My storage to a small of Plot of Land I intend to build 4 houses on if I could. Only to find the aftermath of the Previous poison reawakening. I had tried 5 years earlier briefly, but on realising the powerful person who was trying to harm me. I again relapsed into a depressive state, and likewise later this time some 20 years ago, involved them literally causing a further complete breakdown in my health.
This involved me eventually getting the matter into the Mold Crown Court. where I won and was exonerated by His Honour the Judge Stating that "I could leave his Court without a stain to my Character".
By this time I was Doolally, completely broken.mentally, I left Court walking above the ground, When about 20 yards away on the Court Steps My Barrister said to me "You Do realise" This client" will never let you go as there is no double Jeopardy in Planning. Immediately I became 6ft under into a deep depression.
Tried starting again 1 year later, attacked. and so it has proved time and time again.
Eversince then, this has proved to be the Case. Recover then attacked again, even recently last year. I had to pay out considerable sums for advice just to try and get back to where I was 28 years ago when I made my first attempt to recover, by doing some physical work, to build my houses.
All the while I have been fighting this same client to get help for my severely autistic son now 36 years old.who need 24x7 Care as specified by this same client. This involved 5 years ago on the instructions of his social worker cut the funding for just 35hrs of the 168 Hrs a week, of two carers giving some respite to us his 24x7 Unpaid Family Carers of Last resort. This is now the Subject of an official Complaint. which is ongoing and Later this week I may get some further information.
Not with standing all the above Dealing with Claims for ESA and PIP and their ESA current reassessment.
Do really believe being with your life in front of you, that you cannot deal with your current problems. We have to sort out a suitable care situation for my son before we die.
Just don't give up.
I would probably go with my gut feeling whilst also seeking a second opinion.
Like you, I related very strongly to some aspects of autism shown on that documentary. If you've had a look at the Futurelearn MOOC on Understanding Autism, there's also a lady on there who was diagnosed later in life and whose experiences sounded all too relevant to me.
Do you still have the chance to ask questions regarding the result of your assessment or has that door now closed? I'm asking because, if I'd not received a diagnosis, 2 questions which I had at the very top of my list were:
How do you adjust the assessment process to reflect the ways in which autism presents in women?
Do you make any allowances for the years (possibly decades) of coping strategies, including very heavy masking, that have developed as I've been growing up and doing my best to make my way in the world?
You might, of course, have more questions of them. But, depending upon their answers, this might bolster any decision about seeking a second opinion.
I’ll have a look at the paperwork! They did say they would continue to support me and to go back if I had any questions, and I will admit I didn’t ask these. I didn’t think of them. In all honesty that last meeting where I did get the report was just overwhelming and uncertain for me. I didn’t know what to do and having everyone looking to me was making me very uncomfortable.
Thank you for the advice!