moving stressful? try throwing autism into the mix

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According to the National Autistic Society public awareness of Autism stands at 99.5% of our population knowing about it. The government has a National Strategy for autistic children, young people, and adults, which has a timeline for improvements and progress between 2021 – 2026. It states that since the landmark 2009 Autistic Act, the public have a greater awareness of hidden disabilities. However, the difference between a greater awareness and knowing and understanding or living with autism is vast. We all know nothing can beat 'lived experience' with any circumstance of life, but nonetheless, as a society, we are still in desperate need of being better informed. How many of you know about the National Strategy?

Two minutes into reading our government's 'strategy' my anger reached boiling point. I had to go outside and inhale deeply! What I was reading was more vacuous rhetoric, which has no substance and carries little weight, particularly when the rhetoric perpetually remains just words on a page. If you are a parent of an autistic child or young person, or perhaps are autistic yourself, then I am certain you will at the very least feel acquainted with my sentiment.

Here we are, at the beginning of 2024, so you could say, nearly 50% of the way through our government's strategic timeline: have you felt or experienced a meaningful change? Has your knowledge been enhanced in any way? Has living with autism improved for you because of the government's strategy?

I am the mother of a young person who is autistic, and life could not have been more difficult for us. I can say this with authority as I had no choice but to leave a professional career to become her full-time advocate. I fought cancer in 2018 - 2019, but that was like an inconvenient drought in comparison to the maelstrom we have lived in for the past few years. The controversy and conflict I have encountered on her behalf simply to access basic human rights has left me on my knees. This is not a flippant comparison. My intention is not to ruffle feathers. But I believe fundamentally the difference is because of the distinctions between how we continue to treat and regard physical health and mental health together with hidden disabilities. Whilst having cancer caused torment and agony, the support, the management, the timetable of treatment, even how close friends and family responded were on a different level to my experiences of navigating support, understanding, and learning to live with, and look after an autistic teenager.

From my diagnosis until the completion of my treatment I was on a clear trajectory, and whilst the emotional anguish and fear was at times overwhelming, from my personal perspective it pales in comparison to my experiences of autism and the co-morbidities that all too frequently co-exist with ASC (Autism Spectrum Condition.) So, my view stems from having walked the path of a cancer patient, and enduring the scars that leaves, and the chaotic and turbulent pathway of life parenting a young person who is autistic.

I am not a trained professional, but I am an expert by experience. I read research literature and attended training courses and conferences. I follow well informed social media groups, as well as my profession as a teacher where I taught young autistic teenagers in mainstream, collectively these parts of my life underpin my knowledge. But most importantly of all, is what I learn every day from my daughter. Her voice is what matters most to me; it is her voice that has helped me write this article. So, when it comes to moving house, if autism is in your household, maybe our wisdom could be useful!

Transitions are incredibly difficult for autistic humans. (I will use the word human to encompass all.) A transition could be insignificant to a neurotypical human; it could be the moment in the day where it passes from day to night. A change in the light that sparks a reaction. So, imagine a transition like moving home?

This article is written from the perspective of a parent who is an advocate for both autistic young people and their parents and who is always trying to get it right!

Home is safe; the likelihood is that their bedroom is their haven; their bolt hole, which has probably been adapted to meet their sensory needs, as well as their emotional needs and comfort. Any slight alteration matters, so wading in with an armful of boxes to pack up what is critical in their lives needs a level of planning that equates to Scott's Antarctic expedition in 1912.

Of course, advice is age related, as well as considerations for where they are on the spectrum, and of course, also dependent on how full their cup is. Days can differ, hours can differ, minutes can differ, so catching the right moment is crucial.

I find truth is an essential fortifier in all that I do and telling your autistic human about moving as early as possible is vital. Whilst my daughter is no Mystic Meg, and recoils from the term sixth sense, as if autism equates to some extrasensory perceptive power! There does seem to be an innate ability to read beyond what others choose to present to us.

She excels at sensing insincerity and disingenuous people: professionals or otherwise, so keeping them well informed is a must. (I believe this is connected to their sensory differences.) Her perception never ceases to amaze me, and as much as I am loathed to say it, her ability to know when someone is unauthentic has never failed! A factor that's worthy of consideration when choosing who you will entrust the sale of your home with!

The reasons why you are moving need to be communicated clearly and with absolute clarity of the 'why'. Is it job related, or needing more space,  etc? If you are staying reasonably local, focusing on visualising new routes to school, the supermarket, to Grandparents etc., would be important. Looking at maps, taking photographs of the area, would all make a significant contribution to them starting to get a sense of place. Even creating a visual picture book of the topography of the new area, could be worthwhile – age and need dependent of course. Time to process this new information is a necessity. Don't do what I do, and have now learnt not to do, leave things to the last minute, or bombard them with too much information at once. Impulsive and overloading behaviour are characteristics of my personality and go down like Hiroshima, so forward thinking and planning every excruciating detail, whilst utterly exhausting, need to be prerequisites of your moving cabinet of utensils.

Allowing them to help and to feel a part of what is happening will be advantageous. Photographs and floor plans of your new home can provide a further bridge, as they can plan where they place their possessions in their new bedroom, and what it will look like. This process can be extended to other rooms in the house too. Some may frown at this level of precision and accuracy, measuring is a regular occurrence in our house, and if your sellers need educating, we would be happy to enlighten them. What could appear as pedantic behaviour should not be judged; it is a requirement and like Sherlock Holmes, infamous for his exacting ways, it extrapolates results, and in this case, results equate to calmer, safer and happier. Who doesn't need these states of being in their life?

Packing effectively is as essential as breathing. Strategise your approach; I advise the scattergun style as a huge no, no. This used to be me. I have had to learn the practice of efficiency and methodical – excruciatingly difficult if you, like me, have ADHD. My daughter and I could not have more opposite attitudes and tactics. But my enduring mission to create a living space that serves us both, means I am forever learning and adapting. I advise leaving their favourite spaces to last – particularly their bedroom. Labelling, wrapping, not over loading boxes, and perhaps one or two boxes at a time, with them directing you, is a measured method. Consider, these boxes going into the removal van last, so they can come out first, and perhaps, someone at the other end can then get busy, with the already planned layout, of sorting and organising their room in readiness, or perhaps they want to help – again age and need appropriate. This would be critical for my daughter; she would loathe the idea of 'people' touching her stuff and would want full control. Like neurotypical humans, neurodiverse humans are just as diverse and immeasurable. No pigeonholing here, the word 'spectrum' is in the title of their disability for a very good reason.

By this point, you are probably exhausted, an emotional wreck, and losing the will to live. You then get some delightful person who has not got a clue, say to you, “keeping your own stress and anxiety under wraps are crucial”. The likelihood is you will want to rip their head off, and yell, “don't you think I don't know that you f___ing [insert as you see fit]! This generic infuriating 'advice' evokes an incandescent fury in me. Having to refrain from showing your own stresses is a prerequisite to preventing your autistic human from feeling unsafe, but equally, us parents are human, and we have needs too, and sometimes, yes, sometimes, holding it together is impossible. So, having empathetic and emotionally intelligent people around you is a cardinal rule that I cannot promote enough. Ensure, if you have decent health professionals, they can support you, as well as selective family and friends.

Moving home, as we all know, is one of the top three stress related life events; add autism to the mix and the event is likely to catapult off the Beaufort scale, if not approached with explicit caution and care.

In the absence of the government's vision to:

demonstrate that we have significantly improved public understanding and acceptance of autism… We want the public to have a better understanding of autism and to have changed their behaviour towards autistic people and their families.

The responsibility is on us to create a more inclusive and emotionally intelligent society, every minute alteration makes a difference. In our bid to make a change, all those who work at geek, will be educated in understanding autism. There will be no performative masquerading here. This matters and we are serious.

“The national strategy for autistic children, young people and adults: 2012:2026.” Gov.uk, 22nd July 2021. //www.gov.uk/government/publications/national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026/the-national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026#improving-understanding-and-acceptance-of-autism-within-society-1

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