The worst thing that 1 #Autism parent can do to another


It’s one thing to be judged by someone who has no idea what they’re talking about and something entirely different to be judged by someone who should absolutely know better.

There are far too many people who still erroneously assume that their personal experience with Autism is reflective of everyone else’s.

Similar to the lady that commented on my poll question, claiming it was awful to ask such a question and that her life has only ever been enriched by her child with Autism.

Perhaps her life has only been enriched by Autism and she’s never been frustrated or overwhelmed. Maybe she’s just not comfortable admitting that she sometimes misses her life before Autism?

Who knows..but frankly, it doesn’t matter because here’s the problem.

Families deal with kids in various different places on the Autism Spectrum. Some kids are very high functioning (which doesn’t necessarily translate to easy), while others are very low functioning (which doesn’t necessarily translate to more difficult). Still, many others are somewhere in between.

For some families like mine, every day is a financial, emotional and physical struggle. The stress, exhaustion, sleep deprivation, responsibility, guilt and feeling of being completely overwhelmed is indescribable.

There are plenty of days where I don’t think I can muster the strength keep fighting. There are other days where I experience the happiest moments of my life and find the strength to get back up and move forward.

On the other hand, for a million different reasons, some families simply have it easier. Maybe their child is less impacted by Autism. Maybe they are in a better financial situation and while that doesn’t fix anything, it does open a great many doors that aren’t available to the rest of us. Maybe they’re just stronger. Maybe they just have an amazing support system in place.

The point that I’m trying to make is that I never assume that my life as an Autism Parent is any more or less challenging than anyone else’s.

When people reach out and tell me that they thought their life was hard until they read our story, I always respond the same way. I tell them that everything is relative and we all deal with things in different ways.

It’s important that we never shortchange ourselves by comparing how we feel we’re doing as parents to how we feel others are doing. Inevitably, we compare our weaknesses to someone else’s strengths and we will always lose.

The truth is, my life may seem impossible to you but I may not be able to walk ten steps in your shoes if given the opportunity.

It’s so important to remember, everything is relative.

When we judge other Autism parents for speaking their personal truth, simply because it doesn’t line up with our own, we’re not only wrong, we’re setting Autism Awareness back. If we want the world to be more understanding and accepting of those touched by Autism, we have to first lead by example.

When you read The Autism Dad’s story you’re learning about how Autism impacts one particular family, mine.

It’s not meant to be representative of the Autism community as a whole. It’s my personal story and while you can gain invaluable insight and knowledge from my experience, I can gain just as much, if not more, from yours.

Don’t judge others because your experience has been different.

If Autism has been the best thing to ever happen to your life, more power to you. I’m happy for you, I really am. Please don’t dismiss the challenges that the rest of us face on a daily basis. For many of us, being an Autism parent is the most challenging thing we’ve ever had to take on.

While my life can be overwhelming, exhausting and many times, more than I can cope with, I know that your experience can be better or worse than mine.

When we say things like it’s awful to miss your life before Autism, you have no idea how hurtful and demoralizing that can be. It takes courage to admit something like that.

Do I sometimes miss my life before Autism?

You bet your ass I do!!!

Does that somehow mean I don’t love my kids with Autism more than anything in the world?

You bet your ass it doesn’t!!!

We may be Autism parents but we’re also human beings. I can’t imagine anyone not missing the life before Autism at some point along their way.

That’s not a bad thing. We can both love our kids with Autism and still miss our lives before. These things are not mutually exclusive.

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Ainslie

This is interesting. I was the one who said I sometimes missed my life before parenting. I miss freedom sometimes but I prefer my life now even though it’s more complicated. Autism doesn’t really factor in to the equation. I think parenting in general is just difficult, but that is not to say it is bad. If I am specifically speaking about my autistic child, I think I am a ten times better human being because of him being the way he is. I have learned to advocate because of him, learned how far I can push myself and what I am capable of. I am infinitely more successful because he is in my life. If he didn’t have such high support needs I would have just kept bumbling through life. I wouldn’t have even gone to university. He shows me how to be brave and persevere.

adamjnew85

I see it’s 2 years since this post was published…and things are no better. My autistic son will be 13 in February, he was diagnosed at 18 months. I was very sheltered from the “autism community” until the last year when I decided to write about our experience in a blog, and joined twitter, and what a shit show that can be.

Arguing over whether you should say autistic or with autism, and whether the puzzle piece is as bad as a swastika ‍♂️ I have my preferences (autistic and I don’t use the puzzle piece) but I don’t jump on people for having different opinions. People being respectful of each other would make things a whole lot better for everyone.

And as for sharing your own experiences, you have to put “this is just our experience” in big flashing letters, to stop the trolls flooding in, and even then some will come.

I’ve come across the odd person who’s views I think are harmful, but mostly were all just parents or autistic people who’ve been thrust into a world we are trying to make sense of, which the majority of people have no understand of. I have met some really good and supportive people, it’s just a shame not everyone is like that.

Adam – http://daddoesautism.com

kimmy gebhardt

I don’t see the person’s actual response so I don’t know their exact wording, but I’m curious why you find it so offensive? I get that it feels judgmental but weren’t you asking for opinions and wasn’t that her opinion? To me it sounds like that person is afraid to feel okay with missing the ‘before’ because it probably feels disloyal to her kids. That said, I know of very few parents (not just autism parents) who don’t occasionally miss the before. Doesn’t mean they don’t love their kids, just means that being a parent is stressful sometimes.

Mark

This is a totally valid question. As you say it doesn’t mean you don’t love your kids. I have 1 with ASD and 1 without. The high level of supervision required for my ASD son has massively restricted my life and career and to be honest I resent this. Parenting is hard but they do grow up and get more independent ( if they are NT) – this is not a future I see for my ASD son. At the moment I can’t work and he can’t go to school because of violent outbursts. The endless appointments and making arrangements to accommodate his difficult behaviour are wearing. So yes I do really miss life before autism. I miss feeling genuinely relaxed.

Kiran

Mark I feel your pain. I am an autism teacher and everyday I see parents coming to pick up kids, looking totally worn out. I understand I may not be able to help but as a teacher I can make their day better by keeping their child for 6 or more hours while they can get some peace and quiet to rejuvenate. Join me at instagram @onspectrum so we can share ideas.

LTJ

I had Kurt Eichenwald tweet at me that being an autism parent “isn’t hard” because he’s raised a ch… https://t.co/Su3D8N8HVY

Beccajoojoo

I think it’s a valid question, not a value judgement. I miss my life before parenting much the same… https://t.co/SncNsyaPX1

Ainslie

I don’t think there is a parent alive who would not say that they don’t miss things like quiet, disposable income, romantic weekends away, going out for dinner and a movie at the drop of a hat…….etc etc etc…… if anyone said that I would say they are a massive liar….

In saying that though I don’t think there are many parents who would want that life back without their kids. Kids grow up, life gets easier….experiencing things with kids in tow is next level awesome.

I don’t think these feelings are in anyway mutually exclusive.

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