Autistic Interviews #16 Elmar
Welcome to the series of online interviews "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!
There will be more interviews being conducted in the future including more Autistic Interviews, Autism Family/Carers/Friends Interviews, Self Diagnosers who were assessed and told they are not autistic (what happens to them?!), and collaborative interviews with multiple autism folk answering questions together for a super interesting look at the spectrum!
If you, or someone you know, would like to take part in future, please email auntie-autism@mail.com to be alerted about and sign up to future interviews.
Views expressed in the interviews are the individuals, not my own.
Now, for the next interview in the series, here's Autistic Interviews # 16 Elmar:
Name: Elmar
Age: 58
Sex: Male
Gender: Male
Nationality: German
Diagnosis: Diagnosed autistic at age 55
Why is diagnosis important to you?
It's the key to a plethora of state aids.
Do you consider autism a disability/neurological disorder/mental health condition/developmental disorder/other? How do these terms makes you feel?
For me, it is neither a disability nor a disorder; but I know many people of the Spectrum who are severely handicapped in their lives by society's response.
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?
Several times misdiagnosed as PTSD, or depression, or both. For me, it is the right diagnosis; and the moment of disgnosis was the master key moment of my life so far.
Is anyone else in the family autistic? How did they all find out?
My wife originally suspected, and sent me to diagnosis. And then I recognized the symptoms in my wife, and sent her there in turn, and she was diagnosed in the same way…
When and how did you realise you are autistic?
Only after diagnosis. Before that, I only knew that I was different.
For late diagnosed people, what effect did diagnosis have?
REGRET. Regret for all the bad things in my life that happened because I did not have a clue. Regret for being badly bullied at school for being different. Regret for studying my pet subject at university, and not finding a real job afterwards because it was so outlandish. Regret for being a single for almost 30 years of my life. Regret for a catastrophically failed first relationship (left alone at the altar). Regret for a catastrophically failed first marriage…
Do you think getting diagnosed sooner would have had an impact?
Certainly it would have enhanced my kowledge of myself, and would have consequently changed my life.
Do you think being diagnosed in childhood was overall beneficial or did it have negative consequences?
I was recognized as "being different", and several people recommended to my parents that I should be seen and assessed by a psychiatrist; but they were so afraid of the concept of a psychiatrist and so concerned with "blending in" and being socially accepted and upwardly mobile that they denied me all that help and even concocted a vast network of lies just to hide the fact that they themselves were probably on the spectrum (they had a lot more to hide), all lies that I believed to be truth until they fell apart after my mother and my - as I now know - stepfather passed away.
Do you tell people you're autistic?
Yes. It is my defence against being thought aloof and overbearing.And in many cases, it is of advantage (my dentist arranges to see me outside official hours so that there will be no one in the waiting-room, my ophthalmologist arranged a special waiting room just for me, whenever I'm in hospital they put me in a single room and the like).
Do you feel more confident expressing yourself/advocating for yourself since diagnosis?
YES
Whilst waiting to be assessed did you feel like you might be wrong/crazy for thinking you might be on the spectrum?
No. I had done enough online research and testing to be clear about that.
Do you have any other mental health diagnosis?
No. Possibly ADD.
Are you medicated/ever been medicated?
Always avoided medication. But I know many people who were put on anti-depressants ndn turned out to be on the spectrum.
Have you ever had positive/negative experiences of mental health support?
Most psychiatrists and psychotherapists did not recognize autism.
Looking back in childhood, what were the signs?
Being wise beyond my age; avoiding other children; some savage anger outbursts.
What was your childhood and teenage years like for you being autistic?
TWO DECADES OF HELL.
If you could go back in time and tell child you anything, what would it be?
Don't trust anyone, always ask for proof.
Are your family understanding about autism/your diagnosis?
Very much so.
Do you live with family & do you think you will ever live independently and leave the family home?
Married and living independently.
Do you feel independent in life or do you rely on family or social workers etc for support?
Some support from self-help groups. Most important are my two inclusive music groups, Auti-Group (www.auti-group-web.de) and SOUNDTISTICS (see Facebook).
Do you have sensory issues?
Acute sense of temperature.
Over sensitiveness as to hair - I can feel separately every grey hair on my head.
Extreme over sensitivity as regards pain.
Over-reaction to some medication, insensibility to others. Difficult to anesthetize, and even harder to wake up afterwards.
Do you stim? And do you stim in public or hide it?
NAIL-BITING, in secret.
Do you have special interests/passions/hobbies?
MUSIC. From being an amateur pianist and choir singer, worked my way to being a semi-professional singer and trumpet player…
How do you think others perceive you and why?
Never considered the question.
What would you like to say to neurotypicals?
PLEASE LISTEN.
What would you like to say to other autistics?
Be courageous. Stand up for our needs. Never be ashamed of what you are.
Do you mask/camouflage?
Not any more.
What type of support do you feel you would benefit from?
More state support as regards officialdom…
Are you in therapy/had therapy in the past?
The one therapy I did was intended for Autistics, but a complete washout for same. Waste of time.
Are you cis/hetero/LGBTQIA+ or Other? (Do you like/dislike these terms?)
hetero. I don't like the need for classifying people like that.
Do you think labels are helpful or not? (labels such as Autistic, LGBTQIA+, Disability, Woman, Man etc)
SOME MAY BE.
How important is autism identity/gender identity to you?
Autism identity is
Are you employed? Do you struggle to get/keep a job?
Never employed for long - always clashed with team members.
What support do you think you/autistic people need to find/keep employment?
Jobs that really are suited to autistic temperament.
Are you Introvert/Extrovert?
INTROVERT.
How do you feel about being autistic?
PROUD.
Do you ever wish you were neurotypical and why?
Never. I would mean I would not be myself any more.
Do you have autistic/neurotypical friends?
Most of my friends are on the spectrum. I find it much easier to get along with people on the spectrum.
Do you have a social circle/one friend/group of friends/no friends?
Most of my social contacts are from musical connections - one big band (18 people), several orchestras, and my two Autistic Music Groups.
If 60% of the population was autistic, what positives and negatives do you think there would be?
Never thought about them.
Thinking about autism research and studies, what questions do you think the professionals should be asking?
The focus nowadays is too focussed on children/adolescents.
What areas of autism studies/research would you like to see more of in the future?
More studies on late-diagnosed autistics!
Political stance
Slightly right of Centre (by US standards, far left)
How creative are you?
Very.
Thank you Anonymous for you voice :)
Stay tuned for the next interview…