Why I no longer grieve for my autistic son

Four and a half years ago I wrote a blog titled ‘grieving for a child I haven’t lost’. It has been read over 100 thousand times since I wrote it and appeared in a number of books and on some popular websites. It’s been one of the most commented pieces I have written and evoked very strong feelings from people, both good and bad.

Time has passed and feelings change. Some advised me to delete that blog. But why would I be ashamed of how I truly felt at the time? You can’t eradicate history and it’s not healthy to pretend something wasn’t real when it was. I stand by every word I wrote back then and I know by being so brutally honest it has helped thousands of others feel less alone and more understood. Four and a half years ago my son was non verbal, smearing, screaming for hours, unable to read or write and needed 24 hour care. He was still in nappies at 6 and a half, having seizures, his behaviour was ‘challenging’ and every single day felt never ending.

He’s now 11. He’s still not toilet trained, still smears, now officially diagnosed epileptic, still has challenging behaviour and still non verbal. He still screams, he still can’t read or write or dress himself but something fundamental HAS changed: I no longer grieve for him.

I refuse to debate wether ‘grief’ is the right word to use for what I went through. I am the one that went through it and I know the intensity and depth of my feelings and the struggles both my son experienced, and in turn I felt as his mum and full time carer. The day I sat on that park bench and poured my heart onto paper was a day of truly understanding the reality of the pain, heartbreak and despair I felt. No-one has any right to undermine that unless they were living my life. My feelings and thoughts are not up for debate and never will be.

But things have changed now. A few days ago I took my son a trip to his favourite place. He now has a means of communication and I have learnt to listen. While he still can’t communicate verbally, after a lot of frustration and heartbreak, he found his own way of sharing his world through unconventional means. For him this is a unique combination of you tube, google street map, photos and using items of reference. He shows ingenuity and creativity daily as he tries to convey what he wants to wear, eat, and do. I have had, in turn, to be wiling to put my prejudices aside, be patient, and be willing to listen with more than just my ears.

Many misunderstood my grief as not loving my son. The opposite was in fact true. It was my intense love for him that made me grieve what I was missing as a parent and also the reality of what he will miss throughout his life.

But back to our trip and why I no longer grieve for my autistic son.:

He woke up on Saturday and made his way downstairs to ‘his’ chair. He pressed his iPads on (yes he has two!) and scrolled through his history of videos in YouTube until he found the one he wanted. He then used the other to go on google street map which is set to begin at his own home. Within minutes he had taken himself to the local train station on one iPad whilst watching local trains on the other.

I know my son and I know where he likes to go. Together we have a deep understanding now that has helped us both feel happier. He learnt that communication was worthwhile and I learnt the importance of allowing him to decide and control more about his life.

So I took him on a train to his favourite shopping centre to see lifts. On the train I watched as he flapped happily and looked out the window, holding his favourite teddy up so he could see too. He held my hand to get off the train and he took me to all his favourite lifts. We had lunch together in the food court and he dragged me by the hand and pointed to what he wanted. Then when he’d had enough we came home.

I’ve accepted that this is what makes him happy. He’s accepted that I actually have a use and by communicating other ways instead of screaming (which was his communication) he can achieve more.

I struggled but he struggled more.

Love helped us through. We both needed time.

In the four and a half years of us both needing time and changing I noticed something very important: attitudes to autistics are changing. We are much more accepting of difference now and the need to accommodate. Unfortunately though that acceptance still doesn’t seem to apply to parents as they journey through all the emotions involved in caring for, and living with their autistic children.

I am no longer grieving for my autistic son because I have come to accept and acknowledge that his life will always be different, as will mine, and that is OK. But it’s important that that is seen not as a ‘changing sides’ or ‘finally being positive’ but more about a natural journey of learning, patience and love. I haven’t suddenly become ‘accepting’ it was a process of coming to terms with the fact that my entire life will mean caring for my child and his entire life will involve others caring for him.

My son didn’t scream once on Saturday nor did he self harm or even show challenging behaviour. He was happy and so was I.

It’s still difficult at times, for both of us. But instead of sitting on that bench crying we now walk hand in hand past it as he flaps and laughs and drags me back to the car. He’d rather have fun at a lift or be eating lunch than walk around a park with his mum. That’s not something I grieve about now. It’s something I smile about instead.

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Can We Take Autism Acceptance Too Far?

My husband is autistic. Both my children are autistic. I am a huge advocate of autism awareness and acceptance. However I am also a realist and deeply honest and something that has been worrying me more and more is the fact that we seem to be moving perhaps too far in our pursuit of autism acceptance and I am now wondering if the scales are now tipping too far the other way?

What do I mean?

Well for many years the voices of autistic adults were ignored and suppressed. In more recent years, thankfully, this has been changing and some of the most successful advocates for autism are now autistic adult self advocates. This IS a good thing and I don’t want us to stop hearing from autistic adults. I have learnt so much from them and I would love my own daughter to emulate some of them as she matures and grows.

However, there is a balance and with the growth of self advocates there has been a real suppressing and abuse of parents of autistic children (and adults) who have been threatened and bullied because their thoughts seem to clash with the autistic self advocates.

You see autism is a very different experience for different people. For some adults it is just seen as a different way of thinking or a unique way of looking at the world and for them that is absolutely fine and right. Then there are parents, like myself, of children who may never talk themselves and who have extremely high care needs and require round the clock care, diagnosed with the same condition, yet living very different lives. For those families, and I say families because it affects everyone not just the autistic child or adult in these cases, autism is a huge disability and they have a right to voice that too.

Here is a good example of how things have changed:

Six years ago when my son was just four, screaming all day, smearing, non verbal, still in nappies and attacking me I would read posts on support groups which read ‘Help My child is always in meltdown, attacking me and stimming. I’m exhausted and struggling.’ I could identify and I would say so. So many others said similar and the person posting was validated in their struggles while a few would give some ideas of things that had worked for them. Everyone wanted to help both the child and the parent but at no point was the parent made to feel awful for struggling.

Fast forward six years later and the same post in the same group gets very different comments because things have changed. We have been told by autistic adults how much they need to stim and how we need to accept them for exactly who they are and embrace their differences. While that is absolutely right it has also lead to parent bashing and now the same parent gets comments such as ‘how dare you make this about YOU!’ They are called a martyr mum for struggling and some even go as far as to threaten to report them for abuse claiming the child is struggling because they are such an abusive parent. What then happens is the parent feels worse than ever, even less equipped to support their child and even more isolated than before.

Then there is the cases of genuinely concerned parents desperate to help their struggling children asking about therapies in order to help their child make friends, communicate better or cope better in school and they are jumped on by autistic adults who were damaged by certain therapies as a child and who say the parent isn’t accepting or loving their child as they are because they want to change them.

We are fast reaching a point where parents are no longer allowed to be human, or ask for support or want to help their autistic child. We are no longer allowed to mention anything that even hints that our child struggles or that they have any difficulties or we are accused of ableism.

Apparently I am not politically correct and ableist by saying my son has severe autism, he is non verbal at ten, not toilet trained and has the academic ability of a baby. However that IS exactly what he has. He has low functioning autism and his reports even state ‘severe mental impairment’. Stating that he won’t get married, have children, live independently and need 24 hour support all his life is suddenly taboo and offensive because his autism is just a different way of looking at the world and nothing more. According to some self advocates I should have my son removed from my care because I dare to say his autism is a disability. Apparently none of his difficulties are actually his autism and all other conditions. They say my attitude is what disables him and not his autism.

We need the voices of autistic adults, as parents we need to know what to avoid and how best to support our children BUT we need to also be allowed to struggle too. The seesaw of acceptance has to swing both ways.

For a long time parent voices out weighted those of autistic self advocates and that was wrong. Now I feel we are in danger of swinging the opposite way and parents who are sleep deprived, heartbroken at watching their child self harming or struggling with suicidal thoughts, or just exhausted by the same ten seconds of a video on replay for 8 hours, are vilified for daring to say autism can be difficult.

Can we take autism acceptance too far?

If we continue to see it just as a different way of thinking or seeing the world we are in danger of losing educational support for so many struggling children and throwing them into mainstream because ‘autism is not a disability’.

We are in danger of losing vital financial help for families because they are too afraid or programmed not to admit their child’s struggles.

We isolate struggling parents leading to an even bigger chance of vulnerable children being abused and parental suicide.

We cut back vital adult services for those who need it because we see anyone with autism as just different and not therefore in need of support.

We need a balance and an acknowledgement that autism is experienced differently by different people and that’s ok. Some need very little support while others need much more and that includes parents as well as autistic children and adults.

Until we accept that the balance of autism acceptance will never be right.

The Importance Of Telling Your Autistic Loved Ones ‘Don’t Ever Change’.

The day my son was diagnosed autistic I broke my heart. He was almost four, had only just started walking, had no spoken language and he was very developmentally delayed. I wanted to do everything possible to ‘make him better.’ I wanted to change it all.

16 months later, in a different clinic, I took my daughter to be tested for autism too. I sat solemnly while the paediatrician and specialist speech therapist listed all the reasons they felt she too met the criteria for diagnosis. I didn’t cry but I did feel concerned about her future. I wanted to change the thought that she might struggle.

Five years later I sat in another room, in another city, with another speech therapist and a psychologist as my husband received his diagnosis. This time I wanted to change his past, prevent the years of misunderstanding and bullying and the subsequent depression it left him with.

It hasn’t been easy for me to accept and embrace the fact that, all except myself, my entire immediate family are all autistic. I can see looking back how I consumed myself with the need to help them communicate, help them socialise, and help them adapt to even the simplest of change. I was tying myself in knots and exhausting myself. In my attempt to help them I was inadvertently telling them they had to change.

Now it IS good to empower autistic people with the right tools and support to succeed in life. It IS right to encourage, help and teach them. But what we mustn’t do is force them to change the very being of who they are.

As my children grow and shine in their different ways, and my husband processes his own diagnosis, I am doing my best to help them embrace and celebrate their own uniqueness. I came across this simple post in a Facebook group posted by an autistic adult friend of mine called Joseph. His three words are what I want to say to my autistic loved ones.

‘Don’t ever change.’

Isaac won’t ever really understand what that means. His significant learning disabilities give him such a pure and simple outlook on life. While his care needs might be high the core things that bring him joy and pleasure are quite basic. He loves his food, his same bedtime stories every night, lifts (elevators), his bath routine, looking at photographs on my phone and soft play. I took him to soft play recently and watched with pride and overwhelming love as he flapped contentedly to himself unaware of anyone around him. He doesn’t care what anyone thinks of him, he lives each day like it’s the best day ever and he loves deeply. Why would I want to change any of that? He’s amazing exactly the way he is.

Naomi is at an age and developmental stage where she is much more aware of her differences. While her peers attend clubs and groups, play popular video games and play outside she is still happy to line up little plastic toys and immerse herself in her own make believe world. Her literal interpretation of language brings me so much joy as she, quite rightly, reminds me to say what I mean and not use ‘funny phrases’. Her thoughts on life astound me and her ability to empathise and care are incredible. Yes, she admits herself, that she finds some things harder than others but then she’s the first to tell me ‘everyone is different and we are all good at different things.’. She knows she has autism and she isn’t ashamed of it. She’s exactly who she was meant to be and any issues regarding that are for me to work through, not her. Would I really have wanted her any other way? She’s wonderful exactly as she is.

My husband’s autism looks very different to the children’s. He has spent his life trying to change and adapt, fit in, be included and be accepted. The world has tried to change him for over sixty years and as a result he felt ashamed, different, and stupid. Seeing the mental and physical scars he now lives with as a result of this makes me even more determined that our children need to feel loved, accepted and wanted for exactly who they are.

Therapies have their place. Strategies to support have their place. Teaching and practicing social skills have their place.

However we also need to teach our autistic loved ones that they are accepted, loved and amazing exactly as they are.

They need to hear the simple truth of these three words:

‘Don’t ever change’