‘If they don’t like it, it’s their problem.’ Sophie was always a very quiet child. She never cried. We were frightened something happened.’: Dad and daughter both find out they are autistic at the same time

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“Let me say it how it is, parenting is tough. You’re damned if you do and damned if you don’t. I think we can all agree there is no set way in which parents can always get it right. There are too many factors which vary from one child to another, or one situation to another. But if you think it’s tough being a parent, try being a parent to an autistic child. Even better, try being autistic yourself and a parent to an autistic child.

Many parents of neurodiverse children suffer at the hands of uneducated and ignorant people who are abusive and judgmental. They make the parent feel like they are parenting ‘wrong’ because their child isn’t acting how they think a child ‘should act.’ Many schools are not patient or understanding when it comes to neurodiversity and many of these children are not able to communicate at all. It’s hard being a parent of an autistic child, but it’s also wonderful, enchanting and so very rewarding a lot of the time.

My name is Joe James and I’m autistic. My daughter’s name is Sophie and she is also autistic. Sophie is the happiest, most fun loving, intelligent and altruistic person you are likely to meet and it’s an absolute pleasure being a part of her life.

Courtesy of Joe James

Sophie was always very quiet as a child. When she was a baby, we often had to check on her during the night, as she never cried and we were frightened something might have happened to her. She was very quiet until she was about 4 or 5 but after that we couldn’t get her to stop talking (believe me, we’ve tried).

We never noticed anything out of the ordinary (to us anyway) with Sophie at first. She was very energetic, curious, incredibly funny, obsessive over certain things and completely uninterested in others. She was fussy with her food and loved to follow rules. She was very up front and often didn’t understand social interactions. There was nothing out of the ordinary about any of this I thought, as Sophie acted just like me. I had not yet found out I was autistic and I was unaware the things she and I did were very different from most people. My wife just thought I was weird (she wasn’t wrong) and Sophie was a chip off the old block.

Courtesy of Joe James

Sophie would struggle socially every now and again, but she had many friends when she was at primary school. I think more children are accepting of difference when they are younger and it’s most likely why Sophie fit in so well. I had always struggled to fit in no matter how old. But it seemed Sophie was better at masking autism than I ever was.

It wasn’t until I discovered I am autistic, we (mostly my daughter) realized all my quirky differences she also had, were in fact neurological behaviors associated with being autistic. This meant it was highly likely my baby girl was more than just acting like her daddy, she was autistic like her daddy. We looked into it further and after seeing our GP and speaking to the school, (both agreed with our assessment) we put Sophie on the road to discovery.

Now we knew Sophie was autistic, what next? Well, I decided to change one fundamental thing. I decided to change absolutely NOTHING. I changed nothing about my parenting as it turned out I was doing the correct things all along. I had always supported her, understood her, loved her, advised her when she did something wrong (not shout) and acted as a guide and not a dictator. I always treated Sophie very carefully, as I understood she was very mentally delicate. I myself suffer from mental health issues due to bullying from children and aggressive and abusive parenting from my mother. So, I was very aware how one’s mental health can be hurt easily when you are young.

Courtesy of Joe James

As an autistic parent of an autistic child, I had a slight advantage over NT (neurotypical) parents of autistic children. It turns out my dad was also autistic (something else we realized after my discovery) and he was very aloof and struggled to show his feelings (something I have no problem with). He mostly kept himself to himself and was obsessive over his PC computers and stamp collection. I certainly see much of him in me, but I am able to express myself emotionally quite well and I am a very friendly and gregarious person. It doesn’t always help to be the same as your child, you also have to accept them and nurture them without wanting to change them.

My dad passed away earlier this year and I miss him every day. We actually became very close after we realized we were both autistic and one of the last things he said to me before he died was, ‘I am sorry I didn’t do more with you and I love you so much.’ I don’t blame him one second for being the man he was and I told him he had nothing to apologize for. We had learned to accept each other, just as I accept Sophie and she accepts me. I have noticed many parents (mostly dads) don’t want to accept their child’s differences and often certainly won’t accept that THEY may also have the same differences. To these parents I say, time is precious, it’s short and you never know when your time will be over. Don’t waste time wishing you had a different child, just be happy you have a relationship at all.

Sophie is often judged by people as being overly obsessive when it comes to friendships. This has at times been an issue we have had to discuss and as she grows she is learning how to mellow out. Also, many people don’t like how honest she is, but she says, ‘I don’t care, if they don’t like it, that’s their problem.’ I love that attitude. My wife, Sylvia, will often point out we shouldn’t tell off strangers for not following rules. We successfully ignore her advice most of the time.

Courtesy of Joe James

Being autistic isn’t always great and of course there are days we struggle, everyone does, we just seem to struggle more. When those days come about, we are there for each other. We know how the other feels, because it’s how we feel. I’m over the moon that my daughter is autistic, it’s part of what makes her so great. She is flourishing at school even though she cannot go in every day, due to her anxiety and sensory issues. She has very good friends, who are patient and understanding. She has an amazing mom and a great big brother. We are a very close little family unit.

Courtesy of Joe James
My worry is that people will take advantage of her good nature and she may struggle to cope with living away from me. I also struggle with the idea of her not living at home as she is my support buddy, but I would never hold her back from her potential. My hope is she meets a partner who loves and understands her like my wife does me, and she has 3 autistic daughters so I can have 3 autistic granddaughters!
We should help people feel that being autistic is a great thing and not refer to it as, ‘having autism.’ That sounds like they have a ‘thing’ or ‘problem’ rather than just being a minority. I also think it being referred to as a ‘disorder’ or ‘condition’ is very insulting. Einstein’s brain and what it could do was not the result of a disorder, it was an ability to be able to think differently and unlike anyone else. Being autistic makes us capable of thinking of new and innovating things that have advanced the human race for centuries.

I’ll finish by saying one last thing (unusual for me, as I also cannot stop talking) and it is, don’t worry if your neurodiverse child doesn’t seem interested or capable of doing certain tasks or subjects. Just encourage the things they are interested in and good at, because if you do, they may very well end up being the best person in the world at that particular thing. Encourage, support, love, understand and most of all be patient.”

Courtesy of Joe James

This story was submitted to Love What Matters by Joe James. You can follow him on Facebook here and his photography website here. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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