Being a Special Needs Mum/Mom

Let’s start by saying this, nice and simple, I love my daughter. My daughter is autistic. The two are not separate. You cannot have my daughter without her autism. Ergo, I love her autism.

And actually I do. She is quirky, socially awkward, anxious and although I can see that this causes her some distress, I can’t (and don’t want to) imagine her any other way. She walks into the kitchen in the morning with great panache saying, “Mother, I have arrived.” It is, quite frankly, adorable.

Like many girls with autism, she was not diagnosed until later. She was fifteen when we finally had a piece of paper that explained some aspects of her behaviour and some of the distress she was experiencing. With that piece of paper I became a “Special Needs Mum”, which suggests that somehow I am patient, brave, organised and capable. (Or for any potential American readers a “Special Needs Mom” which somehow sounds even more apple-pie and wholesome).

When my daughter was a baby, I was amazed at how someone like me, quite puny, grew stronger each day as my daughter got heavier. I had no problems learning to carry her. Like upper body strength, I assumed my patience would grow similarly.

Reader – it did not.

Friends, family and professionals are lovely, but they do say some things that annoy me. Here I rank my least favourite things to hear from bad to worse.

6. Don’t you feel better, now you know?

No. What I feel is guilt. H has a number of problems with sensory processing and regularly suffers with sensory overload. You have no idea how many children’s parties, soft-play areas, cinema visits I put her through. The number of times I got annoyed because she itched at her clothes. And most of all how guilty I feel that I encouraged her to get rid of her Rainbow Fairy books. She was no longer reading them, but she would spend hours arranging them. I now know it was a really peaceful way for her to stim.

5. We’re all on the spectrum a little bit, aren’t we?

No. We are not. I was an academic and there is definitely a type of academic who is shy, socially awkward, prefers their books to people, with a hyperfocus on their special interest. That could signal some neuro-divergence. Or it could just be that they love their job. My friends might feel that they struggle with some aspects of social interaction, but few of them find it exhausting or incomprehensible. It is not causing them distress.

By the way, I was not that type of academic. I like people, I like noise, I like social encounters. My favourite method of data collection was the focus group, spending time with people, laughing, discussing, conversing. And after a day of writing I would crave company and novel situations.

4. She’s only a bit autistic though?

No. She is thoroughly through and through autistic.

She is sometimes described as ‘high functioning’ – but as many people with autism will tell you this means nothing. From a diagnostic point of view, it means that there is no dual diagnosis of a learning disability. But anyone who spends time with her, would not call her ‘high functioning’. She is a teenager. Her room is a disgrace. She has to be reminded to take care of herself. She is a delightful mixture of poor organisation and stroppiness.

She has been exceptionally good at masking, so you may be judging her performance. But believe me, adolescence, a global pandemic and the death of two grandparents meant burnout and I don't want her mask her way through that.

Everything she is and does comes down to her autism. Like I said her and her autism are inseparable.

3. Is she like Sheldon Cooper?

No, she is like herself.

Let’s break this down.

Sheldon is a physics genius. My daughter is exceedingly talented, but is not determined to prove/disprove string theory. At the moment she loves language, maps and strange facts.

Sheldon is startingly unaware of the impacts of his demands on his friends. My daughter is hyper aware that she is different and constantly frets about any demands she might be making of other people

Sheldon from his haircut to labelling his label-maker, is obsessively neat. My daughter has wild hair and prefers her own chaos.

And this last point, I cannot stress enough. Sheldon is fictional. My daughter is real.

As they say, meet one person with autism, you’ve met one person with autism.

2. But isn’t great that everyone is aware of autism these days?

Are they? Are they, though? I mean really?

I am her mother and I didn’t know, so don’t get telling me everyone else gets it. It exacerbates the guilt (see #6). And what does being “aware” even mean? If you know it exists but wish it didn’t, how is that great? This particular part of my rant is aimed at those who want to find a cure or reason for autism.

My daughter is perfect and she doesn’t need curing or eliminating. She needs accepting for who she is. Knowing that a condition exists, that you are “aware”, is not the same as caring about her. In fact, I’d rather you weren’t aware of autism but were just accepting of the idea that some human beings are different to you. And that whether they have ‘special gifts’ or more likely, not, that they are valuable just as they are.

1. At least there are plenty of support services available these days?

I will be honest I have only heard this once, because many people I know are involved in welfare and caring services. They know this isn’t true. But some complete stranger who got more than he bargained for when he asked why I looked so glum, whilst out minding my own business walking, suggested this to me.

H’s school were brilliant. It was from their suggestion that we went and got a diagnosis. A diagnosis that we had to pay for, because we needed it in place before she sat her GCSE’s to ensure she got the adjustments required. We had to pay for it because the waiting list to get it done via state services was too long.

I have also spent a good deal of my time on hold to child mental health services, ringing every week to ensure that she is still on the waiting list to get support for her anxiety. And one time, they rang back just to let us know that they didn’t have any services, but if they did H. would definitely qualify for them. It took tenacity and crying to get H. the services she deserves and to which she is entitled.

So, Mister “It might never happen, just smile” – there are not lots of services. They are run on a shoe string, rationed out to those at severe risk to themselves or others and with gatekeeping that would put Hades guarding of the underworld to shame.

H. is now getting the support she needs with a wonderful social worker, but we are frantically aware that she will soon age out of the services that have taken us years to get.

So, in summary I am not the epitome of kindness and patience associated with being a Special Needs Mom. I am tired. H. can be hard work. As she should be. As any teenager should be. She should also be supported in her community. And if you want to offer me any help, all I really ask is that you accept her as she is, and oh, don’t vote Tory.