I was recently asked to submit some answers to questions posed by a magazine, the questions really made me think and I’ve decided to replicate my answers below.
I’m looking forward to seeing the finished article and hope it helps with both raising autism awareness and acceptance.
1/ About your daughter (name, age), when she was diagnosed with autism and how it affects her everyday life
My daughter is referred to as “D” as I prefer to protect her identify a bit. People may wonder why I publish photos in that case, but I use them to demonstrate that you can’t see/smell/touch autism, it’s an invisible disability.
She was diagnosed within 6 months at 4.5years old, it became very apparent when she started in mainstream nursery that she had autistic traits and luckily the SENco was very experienced in recognising the signs. Having said that, D was unable to function within the mainstream classroom environment and as soon as she received a Statement of Educational Needs, we transferred her to a SN (special needs) school and she flourished from the first day. She’s 9 years old in May and I’ve been blogging for just over a year.
D not only has autism – with its three major traits OCD, lack of social skills, impaired speech and language – but she also has very high sensory awareness (a sudden noise will startle her or she will pick up on noises that others wouldn’t) and severe anxiety around strangers, unfamiliar situations and unfamiliar places. This causes problems when we are out; for example, someone walking behind/alongside her will alarm her and may cause her to bolt (running away very fast with no thought for her safety, she once ran into the path of a (fortunately slowing down) bus. She will also “meltdown” when overwhelmed by either a sensory element or situation she cannot understand, this can be sudden, noisy and occasionally violent. For these reasons, primarily her safety, we use a SN buggy when out.
We are also starting the diagnostic process for my ten year old son, T on the blog. We have suspected for a while that he is also on the spectrum but at the higher-functioning end. This means that he has the autistic traits of needing the routine, of having sensory issues with his food, of social skills but he is working two years above his level at school and on the whole, has developed coping mechanisms. The school he is at has a very positive autism-friendly environment, it’s mainstream but with (probably) 2 autistic children in every class.
2/ On your website you mention how hard it is to know at first glance if somebody has a disability … what reactions have you and your daughter received (negative and positive) that show this.
I’m going to start negatively:
Because autism cannot be seen, you are relying on people to be empathetic, this doesn’t happen. I can understand that, you see a child (an older child) having what you perceive to be a tantrum in a public place, your initial reaction is it must be bad parenting.
Because we also use the larger buggy, people’s reaction is to stare, point and whisper. I have had people saying “she should be walking, she shouldn’t be in that” and once some children called her a “big baby”. I’m not going to lie and say it doesn’t hurt but you do learn to develop a thick skin, my priority has to be my children after all.
It is very rare that someone will ask why she’s in the buggy and I will happily explain her autism and anxieties but that is exceptionally rare.
3/ What are the most common questions you are asked when raising awareness about autism (and the answers!)
I’m often asked “why” and the simple answer for me is genetics, my husband and I made these beautiful children who just happen to have autism. The genetic balls got thrown in the air and they came down as more severe for D than T. I know that both my children had traits from birth, I don’t blame vaccines or diet (some people use a gluten-free diet) or environment. There is no point in me looking for someone or something to “blame”, it wouldn’t help anybody.
I also get asked if autism can be cured. I did a recent blog about “coping strategies” and my response is that. As D matures, I really hope that she will learn ways to deal with her anxieties and to manage them, but will she be cured? No. But she will learn to “cope”. This is where Twitter is so useful. I follow and am followed by adults on the autistic spectrum, some of whom are now parents with children diagnosed. Their insights are so useful.
4/ How does your daughter inspire you and what inspires your daughter?
My daughter inspires me to keep going, to keep raising not only awareness but acceptance. I don’t want to think too much about the future. I can’t imagine her leaving home and being able to live by herself, but I may be wrong. I want her to be able to live in a compassionate, accepting society. Obviously I have my own concerns about her being female and disabled, exploitation etc.
Having dwelled on the above, we have some incredible highs. When D was diagnosed, I was given no expectations for academic milestones. The first time she wrote her name by herself was a tear-inducing moment, I was so proud of her. She still has problems with writing and will use a mixture of upper and lower case but she can do it. Similarly reading, D wouldn’t learn to read phonetically (which caused its own problems with school) but rather by memory. This took a while longer but now she happily reads books, and reads aloud to me – even if the understanding of what she is reading isn’t always there
What inspires my daughter?
Well, she loves drawing, it’s one of her ways of expressing herself.
I’m not sure what else. She’s always saying that I’m her best friend and that’s nice, we might not do the traditional mother-daughter shopping trips and girlie fun but I’m grateful for the cuddles.
5/ How did you feel when you were first made aware of your child’s autism and why?
I was blissfully ignorant of autism or its traits until nursery referred us to a speech and language therapist in the summer holidays just after she was 4. The therapist was asking all sorts of questions about my daughter’s routine, anxieties, special toys as well as her speech and I left the meeting wondering why she’d asked all these questions. The next day I started googling and autism came up. The penny dropped and we knew, months before diagnosis. This was useful in a way because the SENco knew that I “knew” and we could work together, arranging support for D. It’s a very strange feeling being told that your child has a life-long disability, you almost grieve for the child you won’t have and then accept and become determined to help the child you do have. This process started before the official diagnosis so it wasn’t as much of a shock as it would have been, had we not already investigated.
Some people might think that an official diagnosis and “label” isn’t important, it is. To receive a statement and to attend SN school, we had to have a diagnosis. It’s something that doesn’t matter so much to us as a family – D is D and T is T – but as far as the outside world is concerned, no diagnosis, no help.
And now we’re going through it again with my son, but we’re more prepared this time around and against a timescale as he’ll go to secondary school in September 2014.
Background for me:
We’re based in Berkshire but I have readers worldwide. The main positive for me is reaching those parents/carers who are feeling isolated. If I’ve blogged a bad day or a massive positive and they can empathise and know that someone else is experiencing what they are, it’s a bonus.
I used to work as a PA for directors in a well-known insurance company. I made the decision to be a stay-at-home mum after T was born, my husband is self-employed in an ever-dwindling market and we are not on benefits, despite what the coalition would like to portray (mild rant there).
Both pregnancies were normal, both home births. T was born on his due date, D was 6 days early. I didn’t produce milk so both were formula-milk fed.
Some pictures which I hope demonstrate the invisibility of autism:
The last picture is how D sees herself, as a butterfly, I keep meaning to get it canvassed for her someday.