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. 😭😭🤬

Nobody Believes Me

Being heard is a fundamental aspect of keeping healthy. Mentally as well as physically.

Imagine, you had a gapping wound and the doctor said it’s only your perspective, everything is looking fine to us. How would we as a community react to that?

Yet, so many of autistics, women, people of colour, and God forbid you are all three like me, are left with the trauma and devastating consequences of not being believed.

Gaslighting of the privileged, be it gender, race, position, abled/ allist, has become so common that those with the best intent leave people like us feeling helpless. Why do we need to reassure our self that our perceptions aren’t flawed and they don’t need to revaluate theirs’?

I haven’t written on my blog for some time now and the reason is precisely this. The consequence of schools not taking me seriously about my autistic boys, or the police about the coercive control. And the damage caused by the trusted imam who, after one meeting and phone call with him, dismissed my 16 years of experience of his narcissism.

It doesn’t hurt me that bullies bully. That is a fact of life. What I cannot digest is the lack of care and seriously to their own responsibilities of those with position of power and influence.

For years I told the primary that oldest has additional needs, not being qualified or knowledge to ascertain what they actually were didn’t make a difference because when I did dive in found my own answers, I still didn’t get far for support. And now that history is repeating itself with the youngest at the same primary, I am left with renewed wound, but this time the trajectory already laid out in front.

This episode of Red Table Talk really surfaced a lot of experiences that have led to me always needing to evidence my statements. If you need to prove”, as Dr Raman states, for every little belief or thought, “then you have been gaslighted.”

And that explained my endless emails, documents and questions for reassurance that my perception isn’t flawed. Imagine that being your permanent state of mind. And still I AM NOT BELIEVED.

Many autistics have the need to know every detail, cross referenced multiple times and checked again, on subjects that matter to them. The possibility of rejection is devastating, more so for those like me and my teen who also have rejection sensitive dysphoria which makes us extremely susceptible to gaslighting and easy narcissist victims.

How do we move forward?

The pain of living the consequences of neglect of authorities will never be erased. The approach I have taken is to be well connected with people who do believe me to cater not just for need for constant reassurance, but also to build my army to support me in my battles. This is an unfortunate but vital aspect of social capital that disadvantaged people ironically lack.

I am not believed by authority when I need help, however, that will not dampen by determination. And for that I thank Allah for making me autistic. I am not alone.

Featured

War On All Fronts

Tired can be so understated. Even the word overwhelm.

When you are an autism of two children, who also happen to be coloured, Muslim, victims of domestic abuse, then words just fail to describe how much damage control is needed. And how does one train themselves to do this effectively? Is there some training to help lead such a life? The loneliness really sets. No one there to actually hold you, encourage you, explicitly say they believe your actions are right, that you can rest a while and they will take over. No one to take the tiring burden for a time just so that you can recharge.

It’s constant.

I have been remembering the film In Pursuit of Happyness a lot lately. I am not homeless, thank God, but I live in house neglected and in desperate need of repairs. The trauma, systematic racism, all there. But I have three lives to show up for, not one. We are three with autistic difficulties. We are actively being unsupported. Yet I have to show up for the business. Day shift, then home and kids shift then night shift. Just to pave the future.

What keeps me going?

Future pacing. One day, we will not be defined by our colour or autism. We will have calm spacious house with help. My own executive functions are self limiting. I wont have to do the all the house chores-I can use that time to recharge. I will have a voice, an impact because I will have grown out out my shell and made myself heard.

Struggling and fighting in silence, in nuclear capacities doesn’t help anyone. Systematic change is needed and will only when the system is challenged. This can only happen with strategic thinking, network, use of the power of social media, and a successful business behind you.

Regardless of the tears, these cries are part battle cry, part anger which motivates the fight. Sometimes its despair in a private moment.

I am forced to a fight a battle I did not chose. Yet I am all in without the option of defeat.

A Joined Up Approach?

I am shear knackered at explaining down various phone calls that we need help.

You hear of stories of runaways, suicide, domestic abuse, child abuse, sectioned, physical assault, and what not.

Did you ever care to think how long the story has been going for? What made the escalation happen? Where were the authorities with their ‘duty of care’ and the laws that are meant to protect the vulnerable?

I have suffered the whole rigmarole this week, left the waiting of various call backs.

Then I think to myself, no wonder those with disabilities or differences are left behind,

Those privileged not be coloured, disabled, and / or female, actually can just get on with achieving their goals. The ‘other’ group should be able to as well, in theory, except before they get round to completing that training, they must first:


Email school about lack of provision and understanding of autistic teen.

Email school about racist incident with the said teen.

Deal with his anxiety attacks about going to school, working with Microsoft Teams, losing previously saved work.

Find the right social work department who can assess our teen’s needs

Request statement of need from CAMHS, again, 10 weeks after initial request… for tribunal for DLA. DWP supposed thing that the teen does not have any extra needs compared another 13 year old. Try telling him that when he can’t tolerate his own siblings in the same room and then made to sit in a class of 30 and lunch hall of 200. Or when he can’t read his own handwriting because he can’t hold a pencil correctly. Or he has another pair of ripped joggers because he can’t stop falling over or tumbling, or ‘accidently’ poking his clothes. Maybe ask me how I feel trying to set up my business after being kept up all night with his ridiculously poor sleep.

Why is a joined up approach so difficult? Why is it so hard to believe and acknowledge another person’s difficulty by parking one’s own prejudice. I get it that we see the world through our own limited lens but why not just believe the frustrated mother down the line saying that the teen isnt coping?

How are we supposed to get on with achieving in life if the able-bodies, privileged-coloured don’t effect systems productively to allow for barriers to exist?

The shear exhaustion of dealing with their barriers is what hinders our progression. Not our lack of abilities. Did anyone ever think what toll it takes on a person’s mental health and time when subjected to any form of discrimination and abuse? Its a kick in face that takes time to get over and heal by which time the privileged counterpart cab get on with life.

What would also help, is not having the added difficulties induced naturally by our bodies. Men don’t have to deal with that on top the emotions of a banged up parent. Even better would be do things naturally and actually have two parents deal with the children, abled and disabled.

This is not a hot aired rant. This is a reflection of how society discriminates, how only the affected actually fight to make a difference, otherwise if its not broken (for you) why fix it?

If you can relate to what I wrote here, please share and leave a comment.

See the source image
Scotland’s Wellbeing Wheel for Children

Are we Getting It Right For Every Child?

My Faith Isn’t Weak

Too much uncertainty affects everyone.

I hear that. Especially in lockdown, everyone got a taste of being disabled. But not many actually acknowledged this.

Introverts and anxious folks know what I mean. These are just part and parcel for most autistics. Obviously I cannot comment on behalf of others, but from the people I have known and read from, I can firmly use Set Theory to describe as follows:

All autistics suffer anxiety but not all anxious people are autistic.

I don’t know why this is hard to understand.

I am writing right now as I sit on my bed feeling despair. A very important religious festival just came and went that did help ground me somewhat. A realisation came to me as I had a short burst of emotion.

My faith is not weak. My brain is just made differently.

Anxious and depressed Muslims are normally told that their mental health issues are caused by lack of firm belief in the plan of Allah. I have firm belief. For example, I know just as dawn happens every day, that if I give in charity, I will get more in return. I have never been disappointed so I use this as a strategy to invest when I know income is insecure. Works a treat. See? Belief in the ghaib, the Unseen.

So how come I have this anxiety? It’s not because I am not confident that a result will come. It’s because I don’t know what it will be, when I will get it, what it will look like. I can accept those outcomes when they come. Like, will I get work as a supply teacher? Will I get more terrorist type comments when I wear a face covering? Will I have SWAT images going on in my head if I wear a visor? Which school? How long? Fixed term? Finances? Business? Caring? Moving? Selling up? Separation agreement? Financial settlement? U’s diagnosis? DLA tribunal? Wee one’s SLT referral?

I don’t have new clothes for work. I have the same wardrobe with very few additions from the past few years. Will I go back with the same? But I hate shopping! Kids still haven’t been kitted out for school!

I will leave by sharing a piece of writing I spontaneously conjured up few weeks back on a mental health Zoom for autistic women :

With the wind blowing, even the mighty trees bow to their Creator. Who are we to stand rigid? In our superior intellect, we still shrivel with the smallest of change out with our control. The grace of nature in it’s ability to adapt and accept what’s not in our control, should humble our ego. How can we not take change in our stride? How does the world continue to revolve, when mine has been turned upside down?

Tangled Emotions

29/07/20

Yesterday I managed to flush out the stuck feelings. Even if that meant picking a hallow argument about unmet motherly needs with oldest.

I still don’t feel much lighter. Maybe it’s pms, as the sister picked up on. And the snapping doesn’t help. Everything just tangled together. I am back to being unable to communicate with neurotypical adolescent daughter because her snarky voice is painful. The tone, pitch, the backchat. It’s the same theme I complained about to all three. Lack of respect. How are they to find respect when their father done such a good job of portraying me as the weak, mentally incapable and unstable parent, with whom their life will be a failure?

I seen how his ploy was working so well. I am the emotional mess and he is the calm. I just shut myself out from all three and let it out. For the past week those images returned in my head.

Get a knjfe to the arm.

That’s exactly what he wants. But it’s a release. No one sees how even while not living with us, he seeks control. His mind games mess with the kids. Oldest had to have a non-human contact day last Friday because he was so exhausted. He laster told me that he had a cry that made him feel lighter. I told him I was proud that he recognised his emotions and let himself cry it all.

Interestingly, the boys were not in a hurry to go back for another week. It took them a week to recover from the last one.

I have regressed to my poor focus and motivation, becoming addicted to Bubble Shooter, finding it relaxing. Actually playing that helped me listen to business coaching last night. Pen and paper to hand and playing the game then stopping to take notes. It reminded me of narrowing teachers expectations on autistic pupils.

After the blow of emotions, today, both of were trying to make sense of what happened. I managed to explain that I also have needs of wanting to feel respected and valued and my children weren’t showing this at all. This actually enlighten oldest son.

“Oh, I thought needs were one way in parent-child relationship. The parents tends to the child’s needs.”

Then he went to realise, “that what a spouse is for.”

A big shrug from me followed.

“Well I don’t have one. He didn’t exactly fulfil that need either.”

and then I pointed out, which may have been provoked because of a recent (painfully long) phone call with my father, who I would call estranged, and just very strange.

“I don’t fair well on the male relationship front. No father, no brother, no husband. Just two sons. But the difference is that I raised you two, I have some control on your influences, values and behaviour. I want to shape you to be caring, empathic, self reflecting and able to keep good relationships.”

What’s hurt me so much is the thought of going to court to settle child contact. I have had enough waiting. Some may appreciate that autistics hate waiting . It’s torture. I have been good waiting out for negotiation but not that I have move forward, just to hurt me, he wants to argue in court. It’s the waiting to get a settlement done that’s hard to swallow. The stress of not being able to demonstrate that I am their best option, the fear of not being believed. Not many believe me. I refer to those with power to do something. They never believe me. Whereas he can so easily push my buttons, set off the reactions and say “told you so, she is incapable of being a good mother.”

I leave with one fact, as that’s all I use to reassure myself.
The social worker pointed out that in May, during lockdown, the oldest was doing well and we didn’t require their support.

“Oh that’s because he didn’t visit his father and I helped him with understanding the online learning systems (well I was his PA writing out his diary of to do and he calmed down hugely.

…oh, school and his father caused the meltdowns. I am the one constant that doesn’t harm him!”

Another Perspective

This one isn’t about me.

Today I listened to my dear friend cry, but I was smiling.

I couldn’t express the full extent of my understanding of her experiences she retold over the phone: I could predict them. I was chuffed I had analysed the problem correctly and now my brain was on the search for a solution in the background as she spoke.

The problem is exactly the reason why I write- to raise awareness of the existence of brown autistics. Yes we exist under a blanket of ‘genius’ or ‘gamer’, ‘just unsociable’. For females, it’s a life of being forced to conform, to be ‘proper’, stop asking questions, stop being awkward, abrupt, rude, moody, difficult, bossy.

For the males, the brown parents bow down and accept the autistic tendencies and therefore they don’t see any other way of being. The are just fed their interests and closed them off as just being boys. The need for emotion intelligence is alien. As long as they are good spirited, there really is no need to accept or teach the diversity.

And this was the issue. In the 10 years I knew my friend I seen her husband as being extremely technical, a geek in his own gaming world and no more. I didn’t see much more because his wife was so giving and accommodating. She was blind in her love and hope. Hope for companionship and emotional and social interaction. I was nowhere near beginning my own journey of discovery either. But now that I undeniably accept my own and my sons’ autism, with the curses and blessings, I totally see exactly what she experiences! She experiences an adult version of my teen, who would have grown with no accountability or self awareness. Thankfully I highlight my son’s differences, teach him to love himself with his limitations and enable him to own his autism. What I also do is actively teach him his sister’s point of view or spell out her feelings, and help translate the world around him.

I genuinely didn’t know what to do to make her feel better other than listen, acknowledge her experiences, tell her she is trying her best and it’s not her fault. This didn’t come out years ago because she had the energy and hope but now her mask was falling off.

Normally, it’s us neurodiverse ones who suffer the neurotypical world, but today I seen the other perspective. The only way I can help is by helping her understand the autistic brain, which is unique person to person, so even that is limited.

The biggest issue is his denial of neurodiversity. How do you get a person who doesn’t even acknowledge mental health or states because of his deep rooted misbeliefs stemming from subcontinental culture, to even discuss autism?

We are failing as a community so seriously and dangerously to acknowledge how diverse the spectrum is. For Asians an autistic is only the one who cannot speak and has learning difficulties with obvious behaviour problems. What about the other end of the spectrum? How can I complain about Asians who shun depression when I still struggle educators to shift their mindset about my own offspring.

I don’t want my future daughter in law to cry in despair like my friend did today. All she asked for is empathy, human touch, emotional connection. Unfortunately for her, her spouse isn’t wired like that. Being an Asian wife, she feels she can’t even take a break (yes in 2020) for fear of being blamed because he doesn’t do anything wrong. It would be understood that she is out to ruin her marriage because she takes a stand (oh do I know that feeling).

This experience she gave me highlighted how the world is so different for high end spectrum Asian men than women. (I know this is true for all cultures but more so for Eastern.) I bet if was born a boy, my mother wouldn’t have blamed me so much for my strangeness, apparent rudeness or angry outbursts and meltdowns. My gaming and screen addictions would be normal, my inability to be flexible would be accommodated. Imagine if I stayed in that state all my married life (and I obviously did have my difficulties and meltdowns, but they weren’t tolerated), I wonder if it would have lasted as long as it did.

Our Core Beliefs

Despite being in and out of counselling over the past 20 years, I don’t ever remember being asked what my core beliefs were. I find it difficult to look inward and pinpoint my feelings and causes of my thoughts and actions.

Everyone bangs on about self-care, which is a foreign concept to me. At least I thought it was. It turned out that going to CBT last year was the best self-care I could ever do.

Together, with the therapist, I managed to articulate three core beliefs that my world revolved around. They were:

  • I am not good enough
  • I don’t fit in
  • That’s unfair

Throughout that year, with the help of identifying these core beliefs, I worked on dismantling my negative self-perception and how to change these.

My Aha! moment was when I stumbled across a lady with Asperger’s, I couldn’t believe the connection I felt with someone I barely knew. Her experiences were mine! I made my way to stalk autistic Facebook pages more and more and suddenly I felt myself gravitating toward a community that wrote, thought, and experienced the world like me.

Suddenly one of my core beliefs disappeared. I belonged! I fit in! I joined the Scottish Women’s Autism Network, where for the first time when I read, I read things I could have written. Where being coloured or Muslim made zero difference and being a woman celebrated.

What I realised was that all my life when I felt or believed that I didn’t fit in, it was because I was looking in the wrong places. I was desperate for approval from people who couldn’t imagine what my world was like. Even the one who birthed me.