Be Patient

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The ADHD instinct to think a six-month process will take five minutes.

That’s how Lolo described my frustration.

Add on the lack of strong men in my life. I experience weak men who can’t take action for justice or use power to elevate their egos and harm me.

It’s the overspill that prompts action and attention. Not the actual process of filling up. No one care unless you make noise. I am not making noise for sympathy. I want people to stop calling me strong.

I do not want to fight anymore. How hard is it to get that? I do not wish to be labelled resilient.

The irony of showing my vulnerability came back to take up even more of my exhausted energy. I just people to stop judging me in an extraordinary light. I am human. I have needs. I have weaknesses. I wamt to be loved and forgiven.

The lack of reliable men hurts. Why men? I already have plentiful strong reliable women in my life, but unfortunately, the men also have a part to play.

It’s the 17th May. Twentyfour years on and I am still watiting for life to become easier. Every day and night I see my sixteen year old, I see my brother. The sister longing for her big brother to protect her from the narcissitic men is waiting in vain. At least this big brother is attempting to bond and understand his difficult sister. She craves the same attention, belonging and acceptance that I did and do. Like me rejected by her father and brother. In the past. Alhumdulillah, her brother has returned to provide that emotional support if she would accept it. If she would overcome the communication differences, forgive and let go of unintentional hurt.

I know my post won’t make sense to many, but those who have experienced the oppression of men in power- whether that is domestic violence, professionals, the inaction of relatives, or even so-called well-wishers- will know exactly what I am talking about.

Add on the Highly Sensitive Person lens to all of this and no wonder I am unable to leave my bed or eat or change. It’s paralysing yet I don’t want sympathy or words. I just want to share my experience to let non autisitc and non-ADHD people (aka the neuro-normative) know they can make or break fellow humans with (lack of) empathy.

We all have the power to impact each other.

It starts with words then action.

In Memory Of

I wanted to write about two topics on my mind, but I have lost one of them. It will come to me soon enough.

Right now I am trying to look inward and like a detective, try to understand what is going on.

After a freak fall down stairs, my {kind of former} father in law suffered a fatal head injury. We all knew that his health was deteriorating, with the onset of dementia and recent heart attack. The details are sketchy for me because its all second hand information through my kids, of course.

When my marriage ended, it was only the relationship with my husband that terminated. Since then I have been sincerely wishing to speak to, communicate with and even see my second family. After all, I was 18 when I left home to join theirs. What I lacked here I gained there- a father who was proud of me, a brother who I could connect to on an intellectual level, a sister who was diplomatic, but also genuine and happen to parent similarly to me, and then another older sister who treated me like a daughter and unconditionally took care of me. These personalities never ever seen me as an outsider, as someone who didn’t know their culture and language. That was irrelevant and they made me feel part of their family instantly. Unlike the one who actually brought me there and his mother.

So when the split happened, as well as grieving a heartbreak, dealing with trauma of domestic abuse, both mine and my kids, my sorrow extended to the loss of an extended family who I had come to see as my own. I would argue that my marriage wasn’t a failure because I married a Pashtun. I loath stereotypes and prejudice arrogance. This couldn’t be true because I felt at home with majority of the people there.

They called Dad Kuka {kuka-a}, the Pashtun word, me included. The grandkids called him Oba. It was a status of respect as head of the household. One would think that in a conservative culture such as think the patriarch would be more dominating, involved and overshadowing. But not here.

When I arrived to this new, alien household, I was often confused to see how he was treated by wife and sons. Like a spare part fed and watered then put to a side while they discuss pertinent family politics. Family politics was beyond me too, which later came back to bite. It was like his presence as an inconvenience, simultaneously tokenistic. The real ring leader, or brain behind familial decision making was matriarch. One would be forgiven to be optimistic at this prospect, however this could have been great had she not been misogynist and sexist, with the excuse of culture ingrained as a free pass to raise a narcissist. Thankfully, only one though. The rest didn’t get the opportunity.

Anyway, Kuka was very very fixed in his routine for food, tea, going out, cleaning and clothes. Everything was fixed and should be in order. He had a love for order, looking decent, and having each day look the same. He wasn’t involved in diplomatic decision making unless the tokenistic male head of household voice was required for the gain of the rest. One time I cooked his green tea on the hob for too long and he was so angry at me that he made me taste it. It was super bitter, but having just been introduced to the dry leaf tea under year or so ago, I was unaware of the taste. He taught me that lesson surely, never to be repeated. Looking back I don’t think he would have done that had he not seen me as one of his own. There was formality between us but then there wasn’t. I wasn’t allowed to share personal thoughts with him, but he got to know my personality through my actions, reactions, housekeeping, uni results and then parenting. He seen me as an achiever, as someone who clicked on to his likes and routines and upheld his values of education, progression and all things in order!

It was only when I was going through my son’s autism assessment and made it my area of deep focus and obsession that I started connecting the dots. When I began to understand that autistic people are hugely different from one another, even in the same family, that I began analysing, comparing and contrasting the members of this family. Every time tea or dinner was ready before being, I was met with delight and appreciation. It wasn’t that hard for me to gain these brownie points to be honest because he was literally like clockwork. I enjoyed taking time out and listening to stories, insights and points of interest while some others around us scoffed mockingly. I had a need to for tidy and clean areas so I was constantly cleaning and scrubbing when I visited. More easy brownie points. And that’s how my relationship with Kuka developed. He not only valued what I had to say, but also what I wanted. He encouraged my further education, proud of my career and my children’s development, all the while his son would put me down and down play any of my strengths claiming credit. He even disliked his brother holding me in worth and respect.

You will have guessed by now, Kuka was autistic, like me, like my boys.

Losing him knowing this has added to my grief. Because we had a different connection on an autistic level, where he didn’t have to communicate with me on a personal level to understand me, value and even admonish his son for me. He was an ally for me but one that I called upon very late on in the tormenting relationship. Had I exposed his son’s truth years earlier, maybe our outcome would be different. He promised me that his son will no longer study for yet another degree and will commit to work to provide for his family. It hurt me more that he broke his father’s promise than going behind my back to continue his selfish pursuits.

Fourteen months after losing my original father figure, I lost my second. Neither of whom I had blood ties, but the bond of security, pride, protection and unconditional selfless support.

The big gap missing a father just got bigger.

The Impact of Intersectionality

Kimberlé Crenshaw’s work and insight into intersectionality impacted the world over.

Yet, we still see a lack of authentic understanding that creates barriers for those with marginalised intersectional characteristics.

There are many similarities between overt and covert racism and ableism- societal structures that prevent those of us who are ethnic minorities and disabled from living a fulfilling and meaningful life. I will explore the intersectionality of autism and race and the impact on mental health.

Firstly, medical and academic research is heavily Eurocentric. Therefore professionals will have innate biases, even internalised unconscious beliefs that may not be aware of. This leads to a flaw in treatment, but before that, a hurdle in accessing medical support.

Hidden disabilities like autism are still profoundly misunderstood and target of stereotypes, just like cultures and faiths. In the attempt to become a multicultural society, we lack the critique to question power imbalances and biases. When communication barriers are not addressed for both populations, then who so can we expect the compound barrier to be acknowledged? How autism presents in People of Colour differs from the typical white boy stereotype which leads to schools and health practitioners undermining our experiences and even dismissing our struggles. How do we communicate something that isn’t even tangible to professionals? Let’s not forget the angry or difficult  Black woman label that we get stuck with when we try to be affirmative or challenge perceptions. The consequences are more often than not at the detriment of the service user rather than an improvement for the service provider.

The result of decades of racism is generational racial trauma. This can and will manifest into a lack of confidence to seek help and stand up for one’s rights. Autistics already find identifying and asking for help very difficult, add that to the racial inferiority complex ingrained in one’s mindset, then how do we prosper, or even access care? Recently migrated communities have it worst because of the rise in populist culture in the UK where right-wing narratives have been given too much oxygen. Imagine how many autistic asylum seekers and refugees we need to support and don’t.

That takes me to my next point. The impact of incidents – ones that all of the population are at risk of- is far greater for autistics than neurotypicals. The way we perceive the world which such intensity, coupled with rejection sensitivity hurts our mental health. But then add the layer of race to that. It is known that People of Colour suffer more from multiple deprivations-  abuse, employment, education and medical care barriers. This number is even more disproportionate for Autistics of Colour.- and I don’t even mention gender, gender identity or sexual orientation in this! Depression and anxiety are common results for victims of racial abuse, discrimination and isolation, yet our care providers are unarmed with the empathy and understanding required to provide effective healing support.

Lastly, turning towards the various communities made up of rich cultures and diversity. It’s a sad truth that disability and mental health are still a point of stigma. Identifying hidden disabilities is extremely difficult due to ignorance and arrogance as well as fear of reputation. It is almost like colonisation has left such an inferiority complex in us that we much appear perfect to have value. However, no human can be perfect and we all need to be truthful to ourselves, support our communities and improve our understanding if we want to progress in life. Attributing autism as  bad fortune, ‘evil eye’, black magic, something that will be grown out of, or bad parenting will keep the world from benefitting from amazing Autistic humans who have already contributed to the evolution of civilisation

Life happens to us all, but the outcomes are dependent on one’s characteristics, privilege, and socioeconomic background. Employers, educators, health professionals and government policy all need to account for the disadvantage we, ethnic minority Autistics face, by changing how they operate.

This Is Me

I have always described myself as complicated and difficult to handle.

I found this blog post saved in drafts since August 2021. Maybe I had more to share, but was just too exhausted.

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Our self discovery journey is a very complicated one.

As the Messenger of Allah ﷺ has told us to live in this world like a traveller. Nothing is stationary- our relationships, our situations, our loved ones, and even ourselves.

For those who actively seek self improvement and direction the journey is is even more appreciated.

In the past year, the trauma of being brown, Muslim, female, and an autistic single parent continued. Time and again I was faced with darkness and despair. Is it really that complicated? Why is it so common? A toxic and deadly combination of of sexism, racism and ableism led to more generational trauma being passed on and the unfortunate familiarity of the past returned in front of me.

What most people don’t understand is that experiencing the myriad of abuse directly and indirectly is felt with much more impact by an autist. Another neurotypical woman may well suffer from PTSD and depression from domestic abuse, racism, ableism of another disability, but the neurodivergent woman… ironically isn’t permitted to lift the veil of tsunami of emotions and pain in fear of being labelled deemed out of control, lying, or drama queen. Autistic women are only more prone to abuse, the impact is more damaging and deep.

Which public health service is to give us our justice?

April 2022

In the past months I have continued my journey of painful growth which has been overall beneficial. Turns out I am not the only benefitting from my quest for understanding, but others, both known and unknown to me as well. The feedback is crucial to me because of rejection sensitive dysphoria. I am my own worst critic and mostly feel I have nothing valuable to add to the discussion around neurodiversity.

Since beginning this blog post in August, I got confirmation that I have ADHD as well! It’s really not surprising since between 30 – 80% of autistic population also have ADHD. It explains a lot more to me about my behaviours and brain than what the autism diagnosis did.

I have also since August delivered training on understanding Autism though my intersectional lens. I learned a lot from my co-trainer and ended the course with a more respect from our South Asian audience than I began with.

Turns out being neurodivergent is actually pretty ausome! (yes the spelling is intentional!)

I will be back with more reflection and lessons as I continue this journey called life.

Try Harder

The more I think about it, the more I am feeling pretty pissed off. In fact, I feel it in my gut! Sick with annoyance and helplessness.

You know when you just replay your day when you are trying to sleep? Well the penny just dropped at how awful it was for my psychiatrist to compare how HE managed his work load in his clinic to how I should be managing my work at home, showing me how to prioritise, and telling me everyone can find focus hard, especially working from home.

Good for him. Even I could prioritise my classes because I had a timetable that was pre-set, rigid and a whole day of routine planned around work & kids. He gave me atomoxetine which makes me sleepy and have headaches. So he said either lower dose over the next few weeks or “suck it up” and take psychotherapy seriously.

Where is the NHS booklet on ADHD I gave you? Erm what booklet? Oh is it my memory failing me or yours?

Not even an apology when he realised he had never mentioned to me before!

The reason he gave me medication to begin with was because I would have moaned for them so he just gave them. No ADHD diagnostic assessment that my mental health nurse told me about. Just Ritalin to prove me wrong that I don’t have ADHD because I complained to my GP about his colleague dismissing my request to be assessed for it after he diagnosed my ‘mild autism’. This doctor was trying to be careful with his words about my ADHD … because I took offence to the language used in my ASC diagnostic report from his colleague – so he drew me a pretty sketched linear graph showing the negative relationship between ADHD severity and age.

Thank you for highlighting that my frontal lobe has matured in my 36 years. But I still struggle and telling me to try harder isn’t going to help!

Apparently it’s my fault I can’t sleep because I don’t ‘allow’ myself these choices. It’s my fault that I don’t stick to the home timetable I have made myself. My fault I can’t focus or prioritise.

Well clearly these meds didn’t help you- stimulants – so nothing much I can do.

And this is him knowing the incredible complex domestic situation going on in the background. This is the same doctor who, in 2016, sent me away after talking at me for 20 minutes with beta blockers and advice to ditch the abusive husband to help my mental health (I was suicidal then).

A few months ago, he casually asks about self harm and suicidal thoughts. I told him straight out that the Ritalin was making think even more of self harm and before that in our first meeting I told him I do have suicidal thoughts. His response, well parental suicidal won’t have a good impact on the children, will it? He says to a suicide witness. 🤦🏽‍♀️

Privilege, Much?

Now why would I feel this is an episode of whyte male ableist middle class privilege?

  1. Knowing I have an autism diagnosis, and ADHD, the concept of executive dysfunction didn’t cross his brain! It’s a double whammy! Someone please show him this.
  2. Again more of him talking and assuming/telling me off rather than asking me questions 🙄 “When you are working from home, stick to your schedule and don’t, for example, go put the washing machine on.” There is lot to unpack in that one statement, pertaining to complete lack of understanding of female pressures, esp. brown females who are head of a household.
  3. The same doctor casually told me to end the abusive marriage and my problems will be solved. I had the referral to him due to extreme trauma and suspecting autism (2016). Had he any sort of cultural awareness, he would know how damaging and condescending that ‘diagnosis’ was.
  4.  I did talk about pressures even from my mum of my housekeeping, the role of being mum and the
  5. only adult in the house without structure or accountability and how I just get jammed with decision paralysis. Just write your list down, stick to your schedule…He mentioned some technique where you prioritise what’s on top of your paper file… haha he is assuming I have a neat pile! And what about electronic docs, files, work? How can I arrange that in a priority pile?!
  6. Clearly he has no clue of the interaction of ADHD behaviours with female hormones. Of course i have learned strategies, masking and have a grown my frontal lobe. But oestrogen levels also have an impact, regardless of age through menstrual cycle and then pre-menopause and menopause. Dr Amen explains it well here.

This is 2021, in the Western liberal and educated world. What will it take for an autistic woman to get real help! I finished writing feeling more angry than when I started but I needed to write it out. 😭😭🤬