Navigating The World As Autistic Parents With Autistic Children

I have never posted here before, just looking for a place to vent I suppose.

We find ourselves in the somewhat unusual position of being two parents with autism trying to raise two autistic children. While it means that both my husband and I have a unique understanding of our children, their idiosyncrasies, their difficulties, and we are extraordinarily bonded as a family, it often makes navigating the world outside our home a somewhat hellish experience.

Sometimes the lack of help and support is rage-inducing. Both of the children are at secondary school, having graduated from a wonderful, caring, and understanding Primary. The level of academic expectation has increased exponentially, and as parents we are not always equipped to cope with that. Demands for homework that our daughter can't complete without huge levels of assistance, causing huge anxiety spikes and avoidance behaviour in both her AND us. Now, in her second year, Daughter has also started having issues with incontinence at school, which she never had difficulty with before. She says nothing bad is happening i.e bullying or abuse. She says she just doesn't feel like she needs to go until she has already leaked. All the advice online is tailored toward younger children, or children who have always had this problem. The general consensus of the advice seems to be "Be patient" or "Be patient. Buy our stuff." which is, in a word, useless. Son is in first year, and though he is able to manage his homework largely by himself the level of stress and anxiety is palpable. The pandemic and the lack of support for special needs parents and children over the lockdown has put them both behind academically, and now the school is rushing to catch them up. I worry about their mental health.

Trying to contact the doctor about daughter's new wetting issue is also problematic considering the pandemic. Overcoming our own anxiety with phone conversations to cal the surgery and try and arrange a phone consultation with the doctor. Managing the stress of waiting for the doctor's phone call, only for it not to come. Then trying again the next day. Tomorrow morning I have to collect a urine sample from my daughter, and drop it into the surgery, before spending all day by the phone once more. Anxiously awaiting a telephone consultation that may never come.

I suppose the most difficult part for us is that a lot of the tools, tips, and assistance aids that are designed for the parents of autistic children run under the assumption that the parents themselves are NOT autistic. Managing calendars, setting reminders, attending classes on managing the needs of autistic children. They all exist under the umbrella that is OUTSIDE the autism, and assumes that you as a parent are too. The presumption is that you, the parent, are able to successfully organise strategies to help your autistic child fit into the word that is made for you, but not for them.

What happens when you have to help your children navigate a world that isn't built for them OR for you?

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