#heading back to school in feb and finally getting to see a neuro about my muscle spasms while trying not to think the worst possible outcom

[kicksnscribs]

Still alive but at what cost?

[elizawright]

Other Experiences

Interviews with other women with Aspergers

Source: Aspergers Uk Facebook Community

I noticed while being on the group most of the participants were men backing up the statistics that majority of the Aspergers community are male. This backs up my own theory that women find it harder to get diagnosed as majority of what doctors associate as “Aspergers Characteristics” come from male representatives. A good point from somewhen else in the group suggested that it also comes from the fact women are better at masking.

First Interview

Below is an interview I conducted with a lovely lady called Lauren, it was a very interesting read and supported what I already believed to be true through my own experiences. Women with autism are rarely represented in the media and struggle to get diagnosis or support from others as they show different characteristics to the majority of the Aspergers community:

Q. When were you diagnosed with Aspergers?

A. Feb 2009 age 13 nearly 14

Q. Did you find it difficult to get the diagnosis?

(Quite often women with Aspergers are refused diagnosis as they don’t show what doctors perceive as “characteristics”)

A. it was difficult and took about 8 appointments to get a diagnosis as lot of signs/traits were interlinked with other conditions I already had diagnosed

Q. Name 3 things positive about your Aspergers

(Eg, it makes me more creative)

A. I'm strict with time (not been late once), very well organised and creative

Q. Do you feel there is enough positive female autism Representation in the media? If no, how do you think we can improve? If yes, please provide an example?

A. No I was diagnosed with mental health before I had my diagnosis and a lot of people say to women because you can do eye contact or you have empathy/show emotions that they are not autistic when they are. People need to remember women are naturally brought up to be more mature/grown up then men so we learn things sooner than men would.

Q. List 3 things you struggle with? What could nurotypical people do to help change this?

A. Going out to busy/crowded places, meeting new people/socialising with new people and changes especially to routine. Neurotypical people should be taught about autism in school so less bullying happens and more support can happen even simple things like structured routine or explaining something in a different way or putting it into a real life prospect.

Q. Is there anything else you would like to add?

A.People need to realise that autism is a invisible disability and there isn't a certain look like down syndrome. People also need to remember that autism is different in every person so just because one person with autism is aggressive it doesn't mean everyone is going to be aggressive. Finally to remember autism comes in different levels and severities so one person with autism could live independently with a little bit of support while another person with the same diagnosis might need 24 hour care and support

Second Interview

Another lovely lady called Sophie bravely answered two of the questions for me:

Q. Is there anything else you would like to add?

A. I feel autism is based more around men. The way this could be improved is if people were more aware that autism can affect both males and females

Q. Did you find it difficult to get the diagnosis?

A. I didnt actually get diagnosed until I was 19 but I went to John Parkes when I was younger as ny mum thought I was different but they only said I am left handed but use ny right hand so it was left at that until I was 19 and my mum started working in a school and realised that I did a lot of the things that an autistic child at the school did

Third Interview

Lastly was a very helpful interview by a lovely lady called Ebony. I felt the most connection with Ebonys answers, pretty much everything she said I could relate to, specifically the struggle our mothers had to get a diagnosis, the miss belief in diagnosis of you don’t fit the stereotypes and the frustration with the lack of positive female representation.

Q. When were you diagnosed with Aspergers?

A. I was diagnosed at 8/9 years old

Q. Did you find it difficult to get the diagnosis?

(Quite often women with Aspergers are refused diagnosis as they don’t show what doctors perceive as “characteristics”)

A. My mother found it difficult to get me an assessment to get diagnosed because I have a genetic condition which they wanted to overshadow autism under. Even though they’re totally unrelated. She fought in court for two years before I was granted a full assessment

Name 3 things positive about your Aspergers

(Eg, it makes me more creative)

3. Aspergers makes me more observant. Aspergers allows me to focus specifically on and learn things really easily with things which I am really interested in, in detail, which is really useful for my degree. And Aspergers makes it easy for me to process visual information

Q. Do you feel there is enough positive female autism Representation in the media? If no, how do you think we can improve? If yes, please provide an example?

A. Absolutely not. Autism seems to be very much represented by men with the very typical characteristics (Big bang theory and atypical prime examples). I think there needs to be more female influencers who are on the spectrum speaking about it and also in movies, using autistic female characters as the main character instead of male

Q. List 3 things you struggle with? What could nurotypical people do to help change this?

A. Change. I guess just not changing things would be helpful but I think that’s just the way of the world.

People thinking I’m not on the spectrum because I’m not good at maths or science and I don’t have a breakdown every two minutes. Not assuming the stereotypes are true in everyone. My very black and white way of thinking. Sometimes this gets in the way of being able to think perceptively, as hard as I try, it can be very hard to understand why something is the way it is.

Interview 4

Interview with a lady who would like to stay anonymous. She has a very interesting story and in the past has done lots of work studying Aspergers in women.

Q. When were you diagnosed with Aspergers?

A. 2007

Q. Did you find it difficult to get the diagnosis?

(Quite often women with Aspergers are refused diagnosis as they don’t show what doctors perceive as “characteristics”)

A. I had anxiety n depression off n on for years. Worked as a advocate an had an abusive partner and it became worse. I went to a gp after reading about the condition and was dismissed by the gp. I took anti depressants n they made me feel so bad. Weight gain, hailing beginning to fall out n head felt like a racing feeling. Went back n was referred for cbt n refused to take meds as suicidal thoughts listed as side affect, which was happening. Went for cbt the lady had an autistic son. She picked up on traits n did n assessment n referred me to psychologist. I think I was quite lucky in my journey, in terms of a diagnosis. My mum said she always knew but she was always on meds. I’m not a fan on medication - personally

Q. Name 3 things positive about your Aspergers

(Eg, it makes me more creative)

A.1. I stopped hating or comparing myself to neuro typical people and what they do so easily.

2. It was ok to be different and I wasn’t stupid

3. I started to see myself and my traits and enjoy being me. If that makes sense

Q. Do you feel there is enough positive female autism Representation in the media? If no, how do you think we can improve? If yes, please provide an example?

A. I think when people are shown autism they are often shown the extreme. I watched a programme on the bbc about people with asperges and I couldn’t c myself in any of them. People always think of Chris Packham but we too are all v different as are NTs. The only other female I know of is Susan Boyle who was exploited in some way. But I believe she’s had support now and on the up bless her

Q. List 3 things you struggle with? What could nurotypical people do to help change this?

A. Too many people

Eating around strangers

Bright lights

In terms of how Nts could help is tough. I’m used to not having help so can be hard saying I’ve got a disability n then dealing with people’s preconceptions or struggling without help. Mentor ship in terms of study n maybe work place could be good.

Interview 5

This interview is another who would like to be kept anonymous, their family is very judgmental of their diagnosis therefor they don’t openly disclose their name.

Q.When were you diagnosed with Aspergers?

A. I was diagnosed in 2013, aged 36

Q. Did you find it difficult to get the diagnosis?

(Quite often women with Aspergers are refused diagnosis as they don’t show what doctors perceive as “characteristics”)

A. I was fortunate in that the clinical psychologist who diagnosed me was a specialist in the female autustic phenotype, which made the diagnostic process easier.

Q. Name 3 things positive about your Aspergers

A. Three positive things about Asperger's:

I stand in solidarity with my autistic kids, and understand them better

The way I think makes me good at writing essays

I think autistic people find greater joy in small things than neurotypicals.

Q. Do you feel there is enough positive female autism Representation in the media? If no, how do you think we can improve? If yes, please provide an example?

A. Autism in the media is usually male, which influences women's ability to get diagnosed and get help. There is a small but persistent push my autustic women to make autistic women and girls more visible, and we need to keep building on that

Q. List 3 things you struggle with? What could nurotypical people do to help change this?

A. I struggle with practical things, like maintaining a routine, using public transport, and following directions. Neurotypicals can help by recognising female autism, and simply being kind