OGWADABWAH! A Life Lived on the Spectrum

Question What is your experience with behaviour therapy?

I/we are very fortunate to have an excellent behaviour therapist I have credited in our non fiction book OGWADABWAH! Because of Edan’s fluidity in terms of baseline behaviour however, the behaviour therapist has had to adapt/re-write the Positive Behaviour Plan (PBS) literally dozens of times. The fact Edan currently has a myriad of restrictive practices which need to be assessed individually and one at a time, also makes for a monumental task with this talented and patient provider.

I was very skeptical about obtaining a behaviour therapist for Edan for he presents as treatment resistant due to the recently added diagnoses of Pathological Demand Avoidance (PDA) and Complex B Personality Disorder which makes therapeutic communication particularly difficult due to the many triggers - known and unknown - that can spark a serious meltdown in him. Our provider being keen on accepting a challenge and a definitive forward thinker, has created templates and scripts for other providers and his carers that mitigate and manoeuvre this minefield which is Edan’s anxiety fuelled explosions. If this precious lady ever leaves us, we’ll surely be the worse for it. Thank you Sophie for all you do 🙌

Question What are some of the symptoms of autism a parent should look for?

The first sign for me, was Edan being significantly behind with language. Every other toddler milestone had been reached. I began recording each word spoken by Edan at age 2-3 and compared his vocabulary to his two older sisters’ at the same ages. It fell below by a mile. However it wasn’t until Edan attended pre-school that signs of possible Autistic behaviour came under his teacher’s attention. The Teacher reported Edan would run in a straight line from one end of the play room to the next over and over, line blocks and toys up, not allow other children to join in with him, or, ask to join in with them. We both also noticed Edan was walking on his tippy toes all the time.

Recently I asked Edan when did he first realise he may have Autism replying that it was when he began stimming and hand clapping (this would have been around the ages of 6-7). As for advising parents, I suggest the top seven signs include but are not exclusive to - a possible ASD diagnosis - not responding to his or her name, avoiding eye and physical contact, meltdowns over seemingly trivial things such as the taste of a food, or a particular sound or smell, stimming (hand flapping, finger flicking, rocking, repetitive body contortions or movements), lining things up, refusing to interact with others, and echolalia.

It’s important to take into consideration that ASD is referred to as a “spectrum” because a person can sit anywhere on this spectrum with no two people’s Autistic traits being alike. Some Auties display high function abilities (Level 1 - and therefore require few supports and are able to mask well in order to cope with life), to Level 3 where there are other diagnoses also at play and the person needs a high level of support (like Edan).

Question Are there things that really bother your son or frustrate/ annoy him?

Are there ever! And the goal posts keep moving. Below is a DO’s and DONT’s list I have prepared (and amended various times) for anyone - especially family and caregivers - coming into contact with Edan. For the sake of answering this question I’ll only add the DONT’s:

DON’T - Bring up adult topics or controversial ideologies such as religion, the afterlife, social justice, morality, retribution/consequences of behaviour, violent behaviour, gaol, money and possessions, and politics. These are the topics that have sparked major meltdowns in Edan. Take Edan to see films, play DVD's, television programs (such as Dr Phil, lnkmasters etc), books, magazines, or video games that deal with the above. Edan's sensibilities are on a hair trigger, and his mind just cannot cope with these themes. Consider him a six year old and only expose him to material a six year old would enjoy. Engage in explanations initiated by Edan on topics that are banned to him (religion, the afterlife, socialjustice, morality, retribution, violent behaviour, gaol, certain films - i.e. Joker, and politics). Edan knows these topics are off limits but he will sometimes test the water and bring them up. Gently remind Edan these topics are not healthy for him and that he knows we aren't going to discuss them. Quickly change the topic and mood to something informative but light such as the types of indigenous animals which are part of a certain continent etc. Be creative and positive. Allow Edan to access the internet without strict supervision and vetting. Tease Edan as he will feel like you are attacking him. Whereas as a youngster he didn't retort to this kind of "horseplay" from his sisters and parents, "grown up Edan" will just take exception to it, stew over it, turn it into a slight and lose his temper. Edan has developed a massive dislike to things associated with the world, so no speaking of travel abroad especially within the context of taking a holiday. Edan has a superiority complex and is in constant competition with others thinking his possessions and wealth is greater than everyone else’s so avoid talking about the ‘have and have not’s’ in society.

Primary and/or incidental OCD or Anger Triggers include: The radio, TV, sniffing, coughing, emphatic S sounds, Numbers especially "6", loud breathing or chewing, whispering (thinks it's about him), crowds, dirty words such as "vomit", "poo", etc.

Question Is it hard for Edan to make eye contact or read facial expressions?

I do not feel Edan has an issue with eye contact but he definitely does/can misinterpret facial expression, especially where his stepfather Adam is concerned. See Picture of Adam below 🔽

Adam has what can only be called a “furrow”; Edan thinks Adam looks like action actor and martial arts expert Steven Seagal because of said furrow. This perceived facial feature gives Edan the feeling Adam is angered by something and therefore not a pleasant person to have around. Adam’s appearance has often been the unintended trigger for a meltdown and, because Adam also works in a position of punitive authority as a Correctional Services Officer, is 6”5’ and weighs 133 kilos and can come across as serious (no real vocal range or inflection), Edan finds interactions with his stepfather difficult at the best of times (see picture drawn by Edan of Adam after a serious meltdown in slide show far below) 🔽

Edan is very sensitive to my moods too - his mother. When I am upset with Edan I have to harness everything within myself not to display my feelings of frustration. Edan can read me like a book and if I’m angry at him and he can tell, he’ll quickly escalate and we are all in danger of a violent meltdown, me included (see picture of bruise following a physical assault against me) 🔽

Question How does your son play and interact with others?

Edan is very solitary, however friendships and interaction with meaningful others are also important to him.

Edan has a rather sentimental nature and ruminates on and is highly nostalgic about what he perceives to have been good times from the past. He’ll often hang on to friendships which occurred a long time ago and may now have been defunct for several years - even decades - as if they are still active. Like all Aspies/Auties making an impactful and long lasting friendship is difficult. All of Edan’s friendship interactions are with other people living with a disability.

Edan can be easily triggered by words, conversation topics and certain visuals, so even a well meaning friend who makes an innocent comment can bring out a side of Edan no one wishes to meet alas; this has created more isolation for Edan who also lives in supported independent living with far too many restrictive practices to make social participation possible.

Question Is Edan interested in a romantic/sexual relationship?

Right up to the age of about twenty two, Edan insisted he was not even mildly interested in sexual or romantic relationships. Then one day out of the blue, Edan burst on the scene as I was quietly washing the dishes in our kitchen and announced; “Mum there’s something I need to tell you and you better be okay with it!”

Edan’s explosive declaration involved the use of tights for sexual gratification which dated back to his childhood years when he’d smuggle his sisters’ school tights, underwear, and sometimes their bras too for what is now called “private time”.

In OGWADABWAH!’s Epilogue on page 181, I conducted a Q & A with Edan on this very topic which is a true eye-opener into how some people on the spectrum view sex, sexual relations, and sexual relief. Edan never facilitates masturbation using his hands, yet he has brought himself to ejaculation through sheer will and fantasy projection.

Edan has been formally diagnosed with Fetishism and today the hallowed tights which were searched for and imported from overseas for their thickest denier, have been somewhat replaced with a Celco Hoodie designed by Edan and reproduced by a local fashion designer for a hefty price tag of $550 plus material costs (see picture below):

The secret and most attractive component of this hoodie is the extra large hood - Edan’s own creation - and the double lined wool blend thickness and blackness. This gives Edan enormous sexual arousal as the hoodie is also worn by the fictional character Dizzie who is his girlfriend in Celco.

For all means and purposes, Edan remains relatively discreet with “private time”, even hanging a sign on his doorknob stating so.

Above are some of the worst behaviours in terms of self harm and property destruction by Edan due to triggers; some so innocuous one can easily be forgiven for thinking WTAF!

Click right to view all photos ⏩

Member for Elizabeth South Australia, Lee Odenwalder MP hosted an Autism Forum to introduce the new Minister for Autism, the Hon Emily Bourke MLC. Adam and I took advantage of this opportunity to launch Edan’s and my book and to put forward a few poignant questions of our own:

When the Hon Emily Bourke introduced herself to our stall, she informed us the Ministerial Library at Parliament House Adelaide has a copy of all books published in South Australia and requested one of mine for display and referencing. So OGWADABWAH! A Life Lived on the Spectrum is now available to any SA politician to read. A small but significant win 💪

Yesterday (Sunday 12th November 2023) I received this reply from the Hon Emily Bourke’s office:

Dear Adel,

Thank you for contacting the Office of the Hon. Emily Bourke MLC, Assistant Minister to the Premier of South Australia and Assistant Minister for Autism.

Thank you also for hosting a stall at the recent Elizabeth autism forum and for your considered contributions to the disucssion.

I am pleased to say we have previously met with Dr Attwood and appreciate his contribution in this space!

We look forward to reading the book and will let you know if we think of any future opportunities 😊

Have a lovely week!

Yours sincerely, 

Lydia

Office of the Hon. Emily Bourke MLC 

Assistant Minister to the Premier of South Australia 

Assistant Minister for Autism 

Emily Bourke is the first appointed Minister for Autism in not only Australian political history, but the world’s!

To say I’m tickled pink about OGWADABWAH! being a part of this would be an understatement.