Autistic Interviews #4 Emma
I believe that we need to tell autistic kids that it’s OK to like what you like, but that doesn’t make you the opposite sex, and no amount of name changing, pronoun changing, hormone blockers or...
Welcome to Autistic Interviews!
Here you will find different Autistic Voices and Real Life Stories shared, each one unique and highlighting different lived experiences, whilst sharing a common ground: autism. Participants choose which questions to answer, in their own style, making each interview a totally authentic real life story!
Name: Emma
Age: 57
Sex: Female
Nationality: British
Diagnosis: Diagnosed autistic at age 51
Why is diagnosis important to you?
As I went through the diagnostic process with my daughter, my son, and then my partner, there were so many 'but I do that too' moments, that I chose the confirmation of diagnosis myself, as I find unanswered questions unbearable.
I also was aware of the crossover of various personality disorders / trauma responses that could very much look like autism, and the concern about self diagnosis without an experienced outside perspective/ professional - as I know, especially as a PDA/ASD/ADHD it it's often very easy to feel and think things about yourself/ believe things/swap and change perspectives, so I wanted to be sure that this wasn't what I was doing. I had previously chosen the autism expert that we all went to, because of several recommendations, and because of his lifelong involvement being an autism specialist, including being a trustee of NAS at one point - it was important for me to find one of the top private experts in the UK. (Similarly my daughter was diagnosed with PDA through the NHS by Phil Christie at the Elizabeth Newson center- Part of my autism is a massive amount of research!)
It was important for me as a kind of validation, and then it became a framework to reassess times when I had struggled or failed in my younger life, and understand what was going on. It was helpful to be able to identify the strengths and weaknesses, and to allow myself some let up in those areas I found tricky. It helped me to look at the wider picture within my family, and note traits going back generations, and make sense of behaviours and responses in a generational way. It helped with understanding how to parent and how to be a parent
Do you consider autism a disability/neurological disorder/mental health condition/developmental disorder/other? How do these terms make you feel?
I consider it a difference - I kind of liked the way it was described to my son - who was / is a computer programmer - it's like most people are PCs and run on windows, but autistic people are apple macs running on IOS. We are all the same, but our software/hardware is not the same, even though it allows us to function in very similar ways. There are some things a PC is much better for, but similarly, there are times when you'd really prefer an apple for particular specialities ...
Is it a disability - well again it depends on what you are trying to do. There are some times when it's an absolute advantage, but the world is designed and run by NT standards and expectations, so in that case then yes, it can disable you to try to fit into that regime. That can lead to mental health problems, but whether it's a mental health problem itself is another matter.
Autism can create a lot of anxiety - indeed something like PDA is charachterised by an overwhelming anxiety - so it's really hard to be definitive about that. As the anxiety of PDA can be self induced, rather from outside demands, I would say that it veers towards a combined MH/ND condition
I think these terms are a bit lazy. I object to the 'developmental disorder' as that suggests an environmental cause, which is more likely to be a trauma response rather than an inbuilt difference - and I think this is where the problems of people suffering from those being diagnosed autistic, or self diagnosing themselves as it seems a bit nicer to oneself than the awful 'personality disorder' label
Of course I am also really looking at high functioning stuff here - there are obviously people at the extreme Kanner end of the diagnostic spectrum for whom their autism absolutely is a disability, and no kind of blessing whatsoever, and who often get overlooked by the 'autism positive' activists.
So in brief I would say that the labels are useful only inasmuch as they are dealing with the individual, and in allowing that individual to be signposted towards the right kind of support.
Have you been diagnosed autistic but you don't think it's the right diagnosis? Or have you been misdiagnosed with other mental health conditions in the past that were incorrect?
No. I've not been diagnosed with anything else that was wrong.
I have ASD/PDA and ADHD
Is anyone else in the family autistic?
Yes, my son and my daughter
my daughter masked well until secondary school where she started to school refuse, and when pushed, started to exhibit some classical autistic behaviours. As she has a lifelong medical condition, the autism was masked and previous behaviours were blamed upon the stresses of that, as well as some trauma that happened in her childhood. She had to be withdrawn from school. she was diagnosed at 14 privately, with a confirmation diagnosis through NHS at 15
My son was more 'typical' in his presentation, in regards things like sensory issues, transition problems, social interaction with peers. After his sisters diagnosis and problems at secondary I took him to the same private psychologist for the 4 full day assessment, with support of the school, at age 10 so that we could hopefully prevent the same disaster at secondary that his sister had. he was diagnosed at 10, but still had to change schools to a small independant in year 9
My partner was diagnosed at 50. and then the following year I was diagnosed at 51
My second cousins have ADHD
I suspect my mother, my grandmother and my great uncle have ASD, and listening to family history, my great grandmother too
How did you end up getting diagnosed autistic?
I self referred to the same private autism expert that my daughter and son saw.
GP has happily accepted the diagnosis
Peter was recommended to me by a friend as he had a good grasp of female presentation at a time when not too many people did (2014)
When and how did you realise you are autistic?
It gradually dawned on me whilst going through the intensive diagnostic process with each of my children
it was a constant 'well I do that' 'isn't that normal' realisation and a bit of an 'ah ha, so that's why that happened' revelation
For late diagnosed people, what effect did diagnosis have?
It was a sense of validation and relief, a forgiveness to myself and a bit sad/angry that nobody noticed or helped, just branded me as 'not trying ' or blamed other things on my failing at times when I was so obviously going off the rails as I was struggling so much with new rules and environments.
However I cannot blame them, because at the time, only the most severely disabled by autism were recognised, and if you were high achieving academically, then you certainly would not have raised any flags - indeed 'aspergers' wasn't even recognised until well after I finished 6th form
Do you think getting diagnosed sooner would have had an impact?
I think if I had understood myself better I may have succeeded professionally. however I had experiences that have made me who I am today, so I really don't know how or what would have changed. Trying to imagine a different life and outcome is quite difficult for me
Do you think being diagnosed in childhood was overall beneficial or did it have negative consequences?
N/A
but for my children, yes I think it is helpful. It removed the personal from stuff they may find difficult.
My daughter was diagnosed later and she rejected the diagnosis initially - she didn't want the negative associations that people made. However as she had become more mature (she is 23 now) she finds it really helpful in understanding herself and managing her emotions/ abilities/ expectations, and plans around stuff that may trigger anxiety
My son accepted it totally but as he has managed to be well supported in a school which has reduced his anxiety, he is less willing to acknowledge it now - probably because it isn't having a negative impact. He would probably like to reject the diagnosis, but I have reminded him that it is wonderful that he is able to feel it has no negative impact, it's important to keep the support package during his next stages of college and university, because it's there as a safety net if things don't work out. He works in an area where it's likely that a high proportion of people will be on the ASD spectrum
Do you tell people you're autistic?
yes and no. Im neither ashamed nor proud, so it really depends upon the circumstances and whether my autism is something that may be of detriment or benefit
Do you feel more confident expressing yourself/advocating for yourself since diagnosis?
Yes. I would not have felt morally right to do so before. I could on behalf of my children, and I could have said I 'suspect' I have autism, but because of the reasons stated previously I think that it's important to have an experienced professional independent confirmation. I know that this is likely an unpopular view, I also recognise how long and hard the path to diagnosis can be, and also how expensive a private diagnosis is.
Whilst waiting to be assessed did you feel like you might be wrong/crazy for thinking you might be on the spectrum?
No
How has going undiagnosed affected you?
I struggled during 6th form with the change of peer relationships at puberty, the change of school, the change of students and teachers, and the change in approach from the teachers. I was confused and frightened by my developing sexuality and that of others, I felt uncomfortable by the less authoritarian approach by teachers and as a result I lost the plot.
I've struggled with employment - I seem to be able to last about 2 years in a job. I've been self employed in a haphazard way for most of my life. I've previously felt like a failure to go from being the gifted child 'most likely to succeed' to someone on and off benefits with no employment history to speak of. I was only able to work well in one place where I was given responsibility and autonomy and it was a highly creative environment. But when it was bought out by a corporate company, I didn't fit the type of woman they wanted there and I was sacked for probably saying the wrong thing to the wrong person.
I've not had great romantic relationships in the past. I lose myself in them. I don't know what to do. I find myself playing a role I am frustrated by. My current relationship is different because we both have ASD and we live separately. previously every relationship I had caused me MH problems
I have had occasions where I'm in a group but I obviously don't fit. They can see I don't but I'm oblivious, and then I put a step out and they all turn on me - even if the thing I did was far far less than any of them may have done. It's like they are waiting for an excuse to expel me as the odd one out.
However I have some really really good friends, most who seem to be ASD/ADHD themselves. They are long lasting.
Do you have any other mental health diagnosis?
no, although I do get depression / burnout annually
Are you medicated/ever been medicated?
No
Have you ever had positive/negative experiences of mental health support?
I had a good psychologist who I engaged well with after my marriage broke up in 2002. That's the only time I really took on board and applied the techniques she advised.
The one time I went previously I was aware I was not really engaging and so that seemed like a waste of time, around 1989. that was again when I had reached the end of the line in a job and a relationship
Looking back in childhood, what were the signs?
I used to spend a lot of time alone living in a fantasy world. I was fast learning signs and symbols and was reading at 2 and doing maths at 3. I had small intensive friend groups. We moved house a lot so it was hard to get a picture really. I was obsessive, to an extreme extent, in the things I was interested in, and not the stuff girls were often keen on. I was scared of the popular girls and hung around with the boys who seemed more straightforward and didn't seem to be mean of game play.
I didn't get the subtleties of social interaction and the boys I liked were scared of me. I had no sexual inhibitions and girls didn't really like me much. I tended until very late to generally hang around with boys.I liked weird fashion and unusual stuff. I was a goth in the early 80s. I lived a life that people thought was bizarre - many times people thought I made up what I was doing because it was out of their experience. I didn't ever think what I was doing was unusual. I( was scared of suburbia, of being married with kids, of mortgages etc.for many years I couldn't handle money at all.
In what ways did you feel similar/different to others in childhood/adulthood?
have always felt completely different to other people. I joked that I used to think I was really special, but then I realised I was just autistic....
What were your childhood and teenage years like for you being autistic?
equal measures of obsessive fun and despair. Highs and lows. misunderstandings. bashing up against my dad. feeling I was wrong and lazy. yet also succeeding in random things. I didn't really know where I was going. I don't think I ever did. I'm an eternal student, would love to have just spent my life following my passions and learning, which is, in a way, what I have done.
If you could go back in time and tell child you anything, what would it be?
That it will be OK . and to follow your dreams. I may have told teenage me that if I wanted to do 'art on a computer' (1982) that perhaps silicon valley might be a place to go and look, as they at least would have some kind of clue as to what the hell I was talking about.
Is your family understanding about autism/your diagnosis?
Yes, I think so, more so now my mother has more of an understanding about it, and beginning to see herself there too
Do you live with family & do you think you will ever live independently and leave the family home?
No, I've lived away from home since I was 19. I came home briefly when I had my daughter in 2000, but lived in an ennexe to my parents house, not in with them. I rented privately from 2002, and then in a HA property since 2006
Do you feel independent in life or do you rely on family or social workers etc for support?
I feel very independent
Do you have sensory issues?
yes, fabric textures, seams and labels, tactical issues
also light, have always been very sensitive to light, and quality of light or I get migraines
sounds - I find it hard to concentrate with too many conflicting sounds as my brian tries to pick up and follow every conversation in a room. loud sounds too
I have POTS on and off, so sometimes my spatial awareness isn't so great. I bump into things and drop stuff
Do you stim? And do you stim in public or hide it?
I think the things I do are biting my nails, rubbing my fingers together (I ALWAYS need pockets) or tapping them together or on something.lip biting a bit
Do you have special interests/passions/hobbies?
All of the hobbies. craft and art type stuff. or collecting things. I seem to need something to be researching and involved in.
I can't even list all the things I've deep dived into. from horses and ponies and adam ant as a youngster, through tents and caravans and singer sewing machine, fabric dying, weird egyptology conspiracy theories (I followed graham hancock back in '94) comic books, studio pottery, gender ideology, local politics, currently knee deep in silversmithing and pottery. Quite often these things end up being side businesses or another degree course
They keep me learning and busy. there are books and often there are tools, there is research to be done and people who make/ do the things to find out about and contact
How do you think others perceive you and why?
I honestly have no idea.
Once I was described at university as 'that girl who is always happy'
I like that
If you could change/improve something about yourself what would it be and why?
I’d have a trust fund
Do you feel understood?
No. I keep myself close to my chest. possibly because I don't even know who I am that much
What would you like to say to neurotypicals?
Just leave us alone and let us do our thing our way. And stop trying to take our stuff as your own
What would you like to say to other autistics?
If high functioning, then Id say what my grandmother instilled in me as a child ' who wants to be normal anyway'
If not, then I don't feel qualified to advise on their / their caregivers lives
Do you mask/camouflage & how does this affect you?
Oh yes, I'm the chameleon queen.
As a result I don't really know who I am if I had to put it down in words. I guess I am just the flow that happens when Im absorbed in something I am enjoying
What are the Positive and Negative experiences of masking
I have PDA so I am quite good at learning how to fit in and follow patterns. So that means I can often see how both sides of an argument works, or experience a lot of different lives
the negatives is knowing where your fitting in aligns with your actual beliefs
What is your biggest personal challenge you’re currently working on?
Coming to terms with how I'm going to financially support myself when my kids leave home, without burning out. Because I've always 'managed' I have no GP history or MH history to build a picture of the issues I have had and I am scared of the current welfare system or my ability to sustain any kind of employment
I'm trying to put the work in to establish my artistic career so that I can support myself alongside the other self employed work I do, and trying to look and plan ahead
What type of support do you feel you would benefit from?
I’m not sure
What mental health support do you have/have had in the past?
Very little. I may do but Im OK at the moment
Are you cis/hetero/LGBTQIA+ or Other?
I am a heterosexual female
Do you think labels are helpful or not? (labels such as Autistic, LGBTQIA+, Disability, Woman, Man etc)
If they are valid, backed up in reality.
If they are scientifically / professionally valid
It depends what they are being used for
If to prevent discrimination, or to help groups traditionally marginalised or under represented then that's OK
I’m not sure that I'm interested in representation of different sexual practices as same sex attracted, opposite sex attracted, or both sex attracted should cover it. Anything else is just the person's private business
What does gender & gender expression mean to you?
I think gender is a bunch of very restrictive boxes which change according to time and place and culture, and which are made up rules that are designed to keep people in their place based upon what sex they are, and mainly imposed by men. I think they need getting rid of altogether and let people be people.
I find it regressive to just swap boxes, because then it's still propping up a patriarchal system, it still says those boxes are valid, it still forces you to conform..
I find it really sad that we, as humans, are able to be interested in the widest range of interests, clothes, fancy whoever we like, dress how we want and express the whole gamut of emotions, but because of our sex there is an expectation of behaviour which limits us.
So, sorry, I think gender expression is rubbish and we should just be who we want to be, and be proud to be 'gender non conforming' people
If you had gender identity issues in the past, before you knew you were autistic, has anything changed about how you view gender identity now through the lens of autism?
No. I used to hang out with boys for most of my life. I was into maths and science and hated all the 'girlie' stuff, but I was under no illusion than I was just a bit of an unusual girl
Do you think autism is important to address when exploring gender identity issues? Why/why not?
Yes, because those gender boxes make absolutely no sense whatsoever, why should girls like pink and fluffy, why should boys be rough and play football. Autistic people like what they like, irrespective of the expectations of society. They are not followers of ridiculous rules. So of course a lot of them tend towards the middle ground, or the sex who will be a bit kinder.
My son found most boys rough, and he hated football, so when he was younger he tended to play with the girls because they played the imaginary games he enjoyed and were kinder to him. The boys were nasty.
Similarly I found the girls were mean to me and I wasnt into their stuff, so I tended towards boys.
didn't make my son a girl any more than it made me a boy
For kids who feel different and are trying to find out who they are, it may be a very simple black/white rule that they will grasp onto and run with, even making it their own special obsession. Especially if they go from being 'weird kid' to 'special celebrated kid'
I think the NT have latched onto this incongruity and in their usual way, simplified the nuances to like this =that.
I believe that we need to tell autistic kids that it's OK to like what you like, but that doesn't make you the opposite sex, and no amount of name changing, pronoun changing, hormone blockers or surgery will make you the opposite sex. You are perfect as you are.
How important is autism identity/gender identity to you? Is one more important than the other? Do you think they are linked together or completely separate?
There are crossovers definitely
My concerns are children being harmed by an ideology that does them physical harm, when it is beginning to show it actually does not psychological long term benefit either.
I want the gender boxes abolished
Are you gender nonconforming? (What does being gender nonconforming mean to you?) Do you think anyone can be gender nonconforming?
I think everyone is gender non conforming to a greater or lesser extent.
I have been more or less so at different times in my life. As a grouchy 57 year old, post menopausal, I know that you cannot escape your sexed body. I know there are alot of reasons in current society why you might like to, and that the gender boxes are increasingly narrow. This is a massive shame and is creating a toxicity for young people either aspiring to create themselves as inst perfect buff alpha males or females, of a highly sexualised and patriarchal nature, or to escape those sexed bodies.
I wish that we could acknowledge the wonderful individuality of natural choice and expression without harm to our children's health or mental wellbeing
Are you employed? Do you struggle to get/keep a job? Do you excel in the workplace? What problems do you encounter?
I both excel and struggle. I have problems with the autonomy that I need, and often struggle with any authority that I see as being a bit rubbish or ignorant. so yes
Do you struggle or excel in school/employment?
Usually excel in subjects Im interested in
Are you Introvert/Extrovert?
Both
How do you feel about being autistic?
I am who I am. I quite like it.
Do you ever wish you were neurotypical and why?
No way
Do you have autistic/neurotypical friends?
All the best ones!!
Thank you Emma for your voice! :)