Autism Awareness – A Confession

boy autism

April the 2nd is World Autism Awareness Day and marks the beginning of Autism Awareness Week. Despite what Klout claims, I am not an expert on autism. I am not an expert at being a mum or parenting either – my children are three and one and I have so much further to go on my journey as a parent, and as an autism parent. It would be ridiculous for me to believe I know more than a tiny fraction of what there is to know on either topic.

Autism expert

I am not an expert on autism. I am six months in from a diagnosis for my son and still learning, still fighting. The speech and language therapy and occupational therapy appointments have not come through, still. I phone every week but the waiting lists are so long. Sometimes I am still scared and angry. Sometimes I do not understand my son’s behaviour or know what I can to do help him. My understanding of how autism affects my son is growing – but he is just one child. The spectrum is wide and the people on it, and affected by it, are diverse. I am definitely not an expert, but I am learning, becoming more aware each day.

If you’d have asked me, this time last year, to think about autism, I would have no doubt smugly believed that my awareness was good. I am a teacher after all; I have taught many pupils with autism, been in dozens of meetings relating to pupils on the spectrum. Last year, I would have seen friends share posts on Facebook, I may have skim-read an article or two and clicked ‘like’. I might even have posted a picture of a puzzle piece on social media, safe in the knowledge that I had ‘done my bit’.

On Autism Awareness Day last year, I did not really know what sensory overload was. On Autism Awareness Day last year, I had never heard of stimming, didn’t know about repetitive speech and behaviours, anxiety, delays in gross motor skills. I had no concept of a meltdown or how it was different to a tantrum.

On Autism Awareness Day last year, I knew children with autism may be delayed with their speech or that they may even be non-verbal. I knew that autistic people would struggle a lot with eye contact, processing emotions and information, and making relationships. I knew that their behaviour could be challenging and that I should not judge parents if their children seemed out of control. I would probably have felt pity for such parents and I would have thought that was the right thing to feel.

On Autism Awareness Day last year, I did not think I had a child with autism.

Without knowing it, the awareness that I so arrogantly and complacently assumed I had, was based on a few misunderstood pieces of information and stereotypes.

When my son was born, I took note of his milestones, keen for him to be on track, as new mothers do. He was slow with gross motor skills, crawling and walking late. When he said his first word, ‘car’, at twelve months, and his first short sentences at eighteen months, when he smiled and hugged me and laughed when he should, I dismissed autism entirely from my mind.

When his stimming became very obvious, his interest in his peers was non-existent, his reactions to noises, social situations, and breaks in routines seemed a bit much, even for a three year-old – well, I put it down to his ‘quirks’. I didn’t think it could be autism. I didn’t think it could be any kind of developmental delay or condition.

The diagnosis scene in the BBC drama, ‘The ‘A’ Word’ was eerily reminiscent of my attitude. He makes eye contact most of the time. He’s so clever with facts and numbers and memory. His vocabulary is good… ok, so he can be a bit slow to process some things, he doesn’t really answer questions as such… and his language is never really expressive at all… and it is really repetitive and restricted to certain topics…he can completely ignore me for minutes at a time…but what three year-old doesn’t do that? That’s not autism!

Not only did the suggestion that my son has autism hit me in the gut like a belly-flop, not only was my own arrogance, my own dismissal of his needs, a bitter, shameful pill to swallow, not only this – but the realisation that my view of autistic people had been so limited, so unfair, so clichéd – well, that made me feel like… a pretty awful human being actually. Of course, I am not, I hope. I am compassionate and kind, most of the time. I just didn’t know what I didn’t know.

So please, if you are someone skim-reading this article, someone whose life has not yet been touched by autism directly, someone who is ‘doing their bit’, yes, even someone a bit guilty of the ‘smugness’ I had – read a little more carefully. Listen and pay attention to what your friends who are touched by autism say. Ask questions. Take any opportunity to learn, become more aware. Don’t try to fit people with autism into a little box in your head – they don’t fit, just like any other group of individuals. Have compassion, understanding, but not pity – for, though life with autism can be a challenge, people with autism are also the bright spot on the horizon, the the loves of people’s lives.

Biggest walking

If you would like to read some more of my own posts on autism, they are listed below:

The Day He Wasn’t Neurotypical – on our diagnosis story

To my son – Your stimming is beautiful – on accepting my son’s stimming as part of him

An apology to my autistic students – on realising my professional needs to do more to help pupils with autism

A Small Thing – on celebrating all progress

The Semantics of Autism – on how words don’t matter, if attitudes stay the same

Thank you for reading and for being a little more aware.

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32 thoughts on “Autism Awareness – A Confession

  1. This has been a very interesting read and I agree with you, I think I have felt like this with a very, very basic knowledge of what Autism is but reading blogs like this is really opening my eyes on just how large that spectrum is.

  2. Thank you for sharing this. For opening up in this way. I’ve learnt something and will have a read of your other posts as well as try and educate myself more. #justanotherlinky

    Nadia – ScandiMummy x

  3. I have definitely been learning more about autism since I started following your blog. Very honest post. Thanks for sharing x

  4. What a fantastic post.

    Until my stepson was diagnosed with Autisim 6 years ago my only understaning was Rainman.

    In those 6 years we’ve learnt so much. Yet still have so much to learn.

    The hardest thing is that no two childen on the spectrum are the same.

    What works for your son might not work for mine, but may work for someone elses.

    A great post. Thanks so much for sharing.

  5. This is exactly how we responded to our child’s diagnosis, total disbelief and pride. As a teacher I can now pinpoint pupils who were on the spectrum and friends who had ASD. It’s two years since our son’s diagnosis and we’re learning every day but we treated him like a neurotypical child for 6 years while attending all the appointments and getting different opinions. Sometimes we forget and its difficult to adapt our parenting to his needs.

  6. Thanks for sharing this. I admit that I am probably guilty of stereotyping people with autism and really have a very limited understanding of what it really is. Posts like these are so important for people to gain a better understanding and appreciation for how it affects people #KCACOLS

  7. I have to admit, I don’t really know enough about autism. I do know they’re different degree’s or types of Autism. Wife has a brother who is totally special needs and I have learned to understand and cope with him 1 to 1. I still need to learn more and be open minded when it come to children with other needs. This post has opened my mind as to how others cope. I know it is hard, but you are doing what you can, for that, you have my admiration.

    Thanks for Sharing

    John M

  8. I expect you have heard the phrase lots of times ‘if you have met one person with autism, you have met one person with autism!’. It is a huge scale and I am so glad we have things like Autism Awareness Week, as it is needed so more people have an understanding. I haven’t watched ‘The A Word’ yet, but I think I might have a look at it on iplayer.
    Amanda. #kcacols

  9. I have to admit what I know on about autism is next to nothing. But I am very opened minded and very interested in learning more on the subject. I agree that no one can really ever know everything there is to know about it as every person/child is different as is their diagnosis. Thanks so much for linking up at #KCACOLS. Hope you come back again next Sunday.xx

  10. Love this post, can really relate to it. Were currently on the long process to diagnosis… We’ve had our first community paeds appointment who said there swaying more towards adhd because of his hyper activity. Also feel like I’m forever chasing the speech therapy people (little man only says like 10 single words, sadly mum isn’t one of them. It can be heartbreaking at times hun, but seems to be like your doing a great job and fighting for your son and what he needs 🙂 xx

  11. The takeaway I have from this is your reaction to understanding what you didn’t fully understand. We all have cursory knowledge about issues that don’t live close to us, that rises when things change. This is you, and that’s beautiful.

  12. Brilliantly written. It’s amazing what you think you understand until you’re in the situation. I’ve always just skim read too, until I met Evie’s daddy who is on the spectrum. Then I got every book and asked every question. I’ve seen first hand a sensory overload, but from a grown man perspective. I can only imagine it’s worse as a toddler when they can’t communicate properly yet anyway. It’s so hard and you wish you could make it easier for them. I think parents of autistic children are all on a very similar but oh so different journey. No two children are the same, but all of them are incredible. For the parent, you need to learn about the way your child learns and processes things, but it must be difficult. Being in a relationship with someone with autism really opened my eyes a lot more to other families and particularly parents who are raising children on the spectrum. Every day as a parent is a learning curve, but every day for an autistic parent is much more of a journey. This article will be an eye opener for a lot of people x

  13. I think we are all a little guilty of pigeon-holing people and situations as we try and make sense of this world that we live in. Your posts are both honest, and straight forward, which makes them great to read – Sharing 🙂

  14. Don’t beat yourself up for not knowing everything about autism. The spectrum is mind boggling. I love your posts, I used to share them all the time on my old work twitter account – you should ask them to RT your posts, they’re great. It’s the @SENDirectnews account (not that I know what they are doing with it these days after all my hard work!) #KCACOLS

  15. Thank you for sharing. This was a heartfelt, fascinating read. I don’t know enough about autism, sadly. I think we as parents dodge learning about because it terrifies us. I will be following and learning now!

  16. When my now 12-year-old was diagnosed at just 3 I didn’t have a clue what Autism even was. 9 years and 2 other children diagnosed later I am still learning!

  17. I think for a lot of us we really aren’t aware of conditions like autism and how it can really affect children and families in general. We only know such a small amount, and until you’re in a position like you are caring for children with autism it must be really hard to know what to expect x

  18. After years of suspecting our son was autistic, we finally got a diagnosis when he was seventeen. The fact of the matter is that many medical professionals are as clued up on autism as they probably should be.

    Being diagnosed so late will impact the rest of his life, which is a bit of a hard pill to swallow, but things will work out one way or another.

    I no longer shy away from talking about his autism and how it affects him and us as a family and not because I want sympathy, but because talking about it is the only way to raise awareness. And the more people that understand autism, the easier life will be for people with autism.

    I hope you and your son get the help and support you need soon.


  19. I didn’t know a lot about autism either when we were going through the diagnosis three years ago and even though I’ve trawled the internet a million times and read countless books, there is still lots to learn. I just like to share what I do know. Good post. #SpectrumSunday

  20. Thank you for sharing this. I don’t know much about autism but I want to learn more. It doesn’t effect our lives directly but I am sure one day we will come in contact with it and I want to know about it. Thank you for being so honest. Thanks for linking up to #justanotherlinky xx

  21. i used to be a preschool teacher and it can be so easy to label children.. I,ve always tried to work with thier uniqueness .. my nephew has Autism and ive always called him my little uniquey!!

  22. I can totally relate to you as a parent with a child who has Autism. I knew nothing when my son was diagnosed and was completely floored and shocked. My reaction to his oddities were that they were just a part of his personality and not anything to do with any sort of disability. My son had great motor skills and developed that earlier than other kids his age but when it came to communication, he didn’t really talk until he was three and even then, it was echolalia, not actual conversation. That took a few more years. I didn’t actually start to have conversations with him until he was in the third grade but he is so smart and now that he’s a teen, I love talking to him! Each child is so different from each other. We are all human and are meant to be different from one another and no disability changes that. This is such a great post! Popping over from #bloggerclubuk

  23. Fantastic post Danielle! I too, was that person, probably less educated on the subject than you. I thought I knew but I just didn’t! My outlooks have changed so much this past year, along with my growing knowledge, yet there is still much more to learn! Thank you for linking up to #spectrumsunday lovely, I hope you join me again this week. After a laptop malfunction (I spilt my wine) the linky will be live later today xx

  24. Since becoming a blogger I am learning more about autism almost every day. I can’t believe you have been on a waiting list for 6 months, I get stressed if Monkey doesn’t make something the nursery is putting on. I would be doing my pieces completely by now, you are obviously dealing with it so much better than I would. I would be completely floored with a similar diagnosis myself. Your writing is always so honest and I am sure this helps others going through the same thing. Thank you for joining us at #BloggerClubUK hope to see you again next week xx

  25. I am a parent of two children which I believe they have Autisim. My 8 year old was told he has ADHD Combined type and I am really starting to think his diagnosis is wrong, because hes been on all types of medications for it which has done nothing! His teacher keeps complaing he has no self control and is being disruptive in class . im at a total loss! I cant seem to find anyone who believes me when I say something is wrong with him. Hes also been diagnoised with Anxiety and Depression. I am at a total loss. My 3 year old also shows symptoms and signs of Autisim and he has an evaluation come June to see if he possibly has it. I read all sorts of blogs about Autisim and each blog i read. I start wondering I wonder if that is what is wrong with 2 of my children. Thanks for sharing this with everyone.

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