How Finally Getting Diagnosed with Asperger’s Changed My Life and How to Support Yourself or Someone You Love

Being Diagnosed

Receiving this diagnoses was actually an extremely positive and relieving experience for me. I was diagnosed on 17 March 2016, when I was 25 years old at the Minds & Hearts Clinic in West End Brisbane by Dr Michelle Garnett.

She made sure I knew VERY CLEARLY that having Asperger’s was a GIFT, but that it also came with a set of challenges, but that if I understood clearly what these challenges were and why I was feeling and experiencing what I was, that I would be able to get the support I need and things would be a lot easier. She was SO RIGHT!!!!

But first lets talk about how unfortunate it is that I wasn’t diagnosed until I was an early adult.. this is far too common! Especially with women on the spectrum. Do you know what pushed me to seek help and find out whether I was indeed on the spectrum? The amazing people of the internet that followed my blog and facebook page. Pretty darn regularly people would inbox me or comment and ask if I was in fact on the spectrum, of course I said no. But eventually it happened so much that I decided to look into it further and seek professional help.

Women are generally under-diagnosed

So why are women so under-diagnosed? Mainly because we show very different traits to men with ASD, women are also much better at ‘imitating’ social skills and learn this from a young age. Dr Lori Ernsperger provides far more in depth information on this issue in this post.

“I have done such a great job at pretending to be normal that nobody really believes I have Asperger’s”

Maybe if I’d had an earlier diagnoses and more health care professionals knew what to look for I would’ve had better support when I was younger and not just thought I was dumb and a total freak.

This is why it was SO relieving for me to receive the diagnoses and have a path to move forward.

Traits & Characteristics of Women on the Spectrum

Remember not everyone will have all of these, this is just a comprehensive list of what MIGHT be experienced by a woman on the spectrum. This is a list I have grown over the years of reading, my own experiences, attending conferences with Tony Attwood and Michelle Garnett and my own research/experiences

  • Can be obsessed with fiction- for me Harry Potter, obsessively so, The Hobbit, getting COMPLETELY immersed in a TV series
  • Overanalysing social situations to the extreme
  • Becoming an expert mimic- knows every lyric to every song, knows every line in the movie
  • Masking that everything is ok in public than massive meltdowns the second they are out of the situation
  • Executive functioning difficulties- struggles with things like going to the Post Office, working out where to start on a job in the home, completing tasks, trying to figure out what to buy at the shops, meal planning, paying taxes, dealing with any kind of authority, filling in forms, taking phone calls, going to any kind of appointment can all provide extreme stress.
  • May not fit in and come off as quite intense and abrasive. As a result may struggle with low self esteem, isolation, anxiety and depression.
  • Might become obsessed with animals and nature
  • Creates fantasy worlds
  • Can prefer playing and talking with boys
  • Avidly observes others
  • Copies or ‘clones” herself on others
  • Might be talented in languages and singing
  • Might appear to be able to socialise well but comes away feeling exhausted and melting down
  • Might have very advanced interests
  • May have a secondary diagnoses of anxiety, depression, anorexia, self harm, selective mutism (especially in teenage years)
  • Can be indiscriminate and EXCESSIVE with affection (inappropriate) or extremely shy and defensive against affection
  • Can have EXTREME reactions to situations, extremely intense, be inconsolable for long periods of time
  • Doesn’t like when others touch her things, can come off rude/aggressive
  • Can be very SELF FOCUSSED and appear only cares about self and not others, this isn’t true but is how they interact as don’t understand social cues
  • Often has a single friend that is their everything
  • May think ‘girly’ activities are stupid, boring and inexplicable.
  • Might prefer Lego, real life objects, nature over toys
  • Might be a tomboy
  • Might struggle with facial recognition and knowing who someone is even after meeting them SEVERAL times
  • Struggles with eye contact, eye contact and trying to listen to what someone is saying at the same time is extremely distracting and uncomfortable
  • Eye contact feels too intense and strong so might look away, fiddle or doodle when listening
  • May not be able to hear people when they are talking to them if engrossed in something else, even if they are right next to them, it’s as if they are completely deaf
  • Struggles to understand non verbal communication
  • Can be self taught readers and speed readers
  • May be able to visualise or picture something they have read and be a walking encylopedia
  • EXTREME emotions, can be extremely happy if something good happens, or extremely angry or distraught if something bad happens, the world is ending, very dramatic
  • Cannot verbalise how they are feeling if asked, may be able to text or write it instead
  • Can be overly sensitive to other people’s negativity- cannot be around it and will try to escape however necessary
  • May find themselves in the same state of emotion as others around them
  • Might have a “sixth sense” and avoid some social situations due to negative vibes
  • Easily frustrated and may have an intense negative emotional reaction to a problem
  • Struggle to have a broad range of emotions
  • Can have unusual expression, inappropriate giggling when in trouble or sad, can become frustrated or silly when unsure what emotion to express
  • Emotional DELAY, might have a total freakout 24-48 hours after something really negative happens and appear completely numb at first but then totally lose the plot a day or so later
  • Might experience intense anxiety over things that need to be done- anxiety may be constant and overwhelming
  • Things that can especially trigger anxiety can be change, disruption of routine, social situations, fear of failure and SENSORY experiences, ie too much light, noise, synthetic smells, activity, uncomfortable touch or clothes etc
  • Especially challenging environments include conferences, supermarkets, school playground, parties, bathrooms, noisy restaurants, bars, airplanes, airports, any mode of public transport, malls
  • May have a fear of being laughed at
  • To cope with their anxiety they may emotionally blackmail, make threats, become extremely passive aggressive, become oppositional and extremely defiant, be extremely messy and rude, lack respect and demand and make orders, be intoxicated with their power.
  • May over share and spill out intimate details
  • Little impulse control when speaking and can constantly interrupt and talk over others
  • May monopolise conversations and bring subject back to themselves
  • Can be extremely sensitive to synthetic products and smells eg cleaning products, perfume, deodorant, personal and household care products
  • Takes criticism to heart, longs to be loved, accepted and understood
  • Can be extremely sensitive to foods, substances, coffee, alcohol etc
  • Can be extremely deep philosophical thinkers and writers
  • May feel confused and like they are on the wrong planet
  • May have pore muscle tone, be double jointed and lack fine motor skills
  • May be extremely unaware of surroundings (example yesterday I was on the phone walking and slammed my head straight into a street sign, I regularly run into things)
  • May perceive visitors or appointments as a threat
  • May feel like they are constantly in impending danger, especially at night or in crowded places
  • May need particular conditions for sleeping/relaxing, certain clothes, soft sheets and blankets, perfect temperature, ABSOLUTELY NO NOISE
  • Feelings are easily hurt and can feel rejected
  • May have a special interest that is extreme in its intensity and obsessiveness

Ok I know that’s a super big list, I wanted to get as much out as possible so people could understand as much as humanly possible.

Tony Attwood’s Perspective

Tony Attwood is well known for sharing his knowledge of Aspergers Syndrome. He has an Honours degree in Psychology from the University of Hull, Masters degree in Clinical Psychology from the University of Surrey and a PhD from the University of London. He is currently adjunct Associate Professor at Griffith University in Queensland.

“From my clinical experience I consider that children and adults with Aspergers Syndrome have a different, not defective, way of thinking.

The person usually has a strong desire to seek knowledge, truth and perfection with a different set of priorities than would be expected with other people. There is also a different perception of situations and sensory experiences. The overriding priority may be to solve a problem rather than satisfy the social or emotional needs of others.

The person values being creative rather than co-operative.

The person with Aspergers syndrome may perceive errors that are not apparent to others, giving considerable attention to detail, rather than noticing the “big picture”.

The person is usually renowned for being direct, speaking their mind and being honest and determined and having a strong sense of social justice. (sound like me much??)

The person may actively seek and enjoy solitude, be a loyal friend and have a distinct sense of humour.

However, the person with Aspergers Syndrome can have difficulty with the management and expression of emotions.

Children and adults with Aspergers syndrome may have levels of anxiety, sadness or anger that indicate a secondary mood disorder. There may also be problems expressing the degree of love and affection expected by others. Fortunately, we now have successful psychological treatment programs to help manage and express emotions.”

Advantages of Receiving a Diagnoses

or even just understanding this better so you can use below support tools

This list is from Tony Attwood’s website here

  • Being recognized as having genuine difficulties coping with experiences that others find easy and enjoyable.
  • A positive change in other people’s expectations, acceptance and support.
  • Compliments rather than criticism with regard to social competence.
  • Acknowledgement of confusion and exhaustion in social situations.
  • Schools can access resources to help the child and class teacher.
  • An adult can access specialized support services for employment and further education.
  • Greater self-understanding, self-advocacy and better decision making with regard to careers, friendships and relationships.
  • A sense of identification with a valued ‘culture’.
  • The person no longer feels stupid, defective or insane.

Support Tools

One of the most IMPORTANT things I learned when I attended a seminar for Girls & Women with Asperger’s with Tony Attwood and Michelle Garnett they said that meltdowns were normal and actually healthy. They help us “reset”.

I found this so helpful to know. It removed the stigma for me. At least I knew it was ok even if others didn’t.

Whenever I’ve had a meltdown publicly I have NEVER ONCE been helped by a stranger. That’s a bit sad don’t you think? Not one single time in my life even when I was a young teen.

But maybe it’s because people just don’t know how, so when someone is having a meltdown the following might be helpful

  • Stay calm and reassuring
  • Stay with the person
  • Do not ask what is causing the distress (they will most likely not be able to verbalise)
  • Do not try to fix the problem
  • Do not move too close
  • Explain that the feeling will pass
  • Do not try and have a conversation or distract them
  • If you know their special interest use it as an ‘off’ switch (eg Harry Potter references)
  • Hand them a notepad or phone to see if they want to write what is wrong
  • If possible help remove them from a crowded situation
  • If possible offer essentials oils such as Balance, Copaiba and Peace to help calm, can apply to feet and wrists (with permission)
  • If the person is outwardly destructive call police or ask for help

You can read more on autistic meltdowns in this blog post I wrote

My friend Kat told me to listen to an incredible podcast the other day with Alex Charfen, his advice was GOLD.

“Obsessively lower pressure and noise, increase protection and support.”

Physical Activity

Can help to be a quick release of emotional energy

Runnings, pilates, yoga, swimming, martial arts dancing or whatever the person most enjoys

Creative destruction can also be hlepful eg recycling and breaking down the boxes

Relaxation

Extremely important to have regular solitude, baths if they enjoy that with essential oils, massage, osteo, cranial sacral, adequate sleep

Time in nature (walking, fishing, camping, on the beach)

Being with animals

Meditation

Crystal Singing Bowls

Notice Breath

Social Tools

Time with a family member or close friend they feel safe with

A creative outlet, writing, music, typing, drawing, painting etc

Having their feelings validated

Positive Affirmations

Telling themselves positive things rather than negative eg “I am a divine expression of life, I love and accept myself exactly as I am right now”

I am not defective, I am different, I am AMAZING!

Balancing Your Energy

Make sure you focus on regular intervals of things that help you emotionally self regulate. Do not book too many appointments or things that will trigger.

Things to focus on regularly

  • Solitude
  • Special interest
  • Physical activity
  • Animals and nature
  • Computer games
  • Meditation
  • Caring for others
  • Nutrition
  • Sleep
  • Reading Harry Potter books (or your preference)
  • Favourite food
  • Whatever you really enjoy doing

To balance out things that can cause stress like

  • Socialising
  • Change
  • Sensory overload
  • Daily living stuff
  • Anxiety
  • Appointments
  • Work related activities or school
  • Executive functioning
  • Expectations

Hope!

Four years ago I was lost, confused, miserable and finding it extremely difficult to cope and not understanding what was wrong with me and why everything was so HARD!!

Now that I understand very clearly what my triggers and challenges are I am able to seek and receive the support I need. Of course I still have meltdowns now and then and situations that challenge me in the extreme, but I am able to navigate them, run a very successful business, am in a happy relationship, managing parenting, speaking nationally and internationally, traveling and enjoying my life. I see my Asperger’s as a gift that is a major part of the reason I am where I am today and am grateful for it all.

I hope you find this blog helpful to better understand yourself, a loved one or others in the wider community.

Jessie Reimers

Support and Resources

http://www.tonyattwood.com.au/

http://www.amaze.org.au/

https://www.asperger.asn.au/

http://www.mindsandhearts.net/

The Complete Guide to Asperger’s Syndrome by Tony Attwood

Safety Skills for Asperger’s Women by Liane Holliday Willey

Asperger’s & Girls featuring Tony Attwood and Temple Grandin

I can be contacted via email at info@getafreshstart.com.au if you would like to republish or interview me about this blog.