Me and my girl and boy, raising awareness and acceptance of autism

The camera DOES lie..

My daughter is 8 years old. If you saw her in a photograph, you’d think “pretty girl, nice smile” – if you met her in person, I’m sure your perceptions would change.

You see, my daughter has autism or ASD – also known as the “invisible disability”. The autistic spectrum is wide and varies from mild to moderate to severe difficulties.

Autism affects my daughter in many ways but the main three are:
Speech & language difficulties
Delayed social skills
Obsessive compulsive disorder.
She also has delayed motor skills and heightened sensory awareness.

Fortunately for me, my daughter is verbal but when her anxieties take over (which they do if she is faced with a change of routine/sensory skills overload/an unfamiliar situation), she will either bolt (run away fast without thought for her own or others safety) or meltdown (totally emotional and sometimes violent outburst).

I risk assess everything before we travel anywhere – even a trip to the supermarket has to be done at a quiet time and we use her special needs buggy as her comfort zone. Even then a person in the next aisle may look threatening to her or she will be startled by a sudden noise and she will want to leave immediately.

So, that child breaking down in public may not necessarily be “behaving badly” – look beyond your initial thoughts and at the wider picture.

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Comments on: "The camera DOES lie.." (60)

  1. PurpleWain said:

    It’s nice to read this just to feel like there are others out there in the same boat. I think that’s another side effect of what you nicely call the invisible disability.

  2. My daughter just turned six. Hello.

  3. Great post – I hear it all the time, “I would never guess your twins have autism just by looking at them.” Thx for sharing!

  4. Education. Education. Education.
    Nuff said!

  5. angstenpaniek said:

    So true. As parents we often have to deal with this. Explaining what may not be obvious at first sight

  6. Hi Jeanette, great post – If there is anyway I can help raise awareness for autism through social media or any other form – let me know.

    Barry

    • Thanks for reading & commenting, RTing any blogs etc would be great, it’s all about getting the awareness out there – or (cheeky question) a mention on yr site on Monday as it’s World Autism Day? Thanks J

  7. Invisible disabilities are very hard, education is the key.

  8. I can’t profess to know much about autism, but it’s been helpful reading your blog tonight. Many thanks for sharing your experiences; look forward to reading more.

  9. Hello , Really enjoyed reading , my son Ryan is 7 and has ASD . thanks for sharing xx

  10. Very informative! I realise just how little I knew!

  11. It’s great to see so many parents of Autistic children getting their voice heard and spreading awareness. Keep up the good work!

  12. This is so so true – we must stop being so quick to judge…typically if I see a distressed child in public – my heart goes out to the parents and the child, as no-one knows the full story when they just see such a tiny snapshot…

  13. I love your honesty! Our children are handful, but without #Different Thinkers, where would we be? I’d love to have you on my radio show sometime, to talk about what you have learned from and about your daughter!
    Light and Love to you!
    Heather M. McCrae, MM MEd
    http://processdifferently.com
    http://authenticyouradio.com/Neurodiversity-Radio

  14. So true! thanks for sharing. I have a son diagnosed with aspergers, tic disorder, ocd and essential tremor. my youngest is also dyslexic and a language disorder. To look at my boys you wudnt think anything was wrong. like u said to meet them in person peoples perceptions change x

  15. totally agree! i posted similar thoughts throughout April for autism awareness. there is nothing worse than someone offering ‘advice’ when your child is having difficulties! my son is high functioning and people look at him all the time and think that he is just behaving badly… he’s getting better as he gets older, but the issues certainly still arise!
    cheers,
    jen

    • Thank you for reading & commenting. I think the older a SN child gets, the more apparent it is that something is “different” – use of SN buggy, meltdowns from nowhere etc. awareness for those who are quick to judge is key.

      • Very true! The older little bit gets, the more apparent her issues are. In my opinion, people who judge do so from ignorance. Some are open to learn and some are not. Someone recently said that when a child has a “tantrum” you should put a blanket over them.

  16. 1funmum said:

    I love reading your blog. It helps to know there are others going through the same things. When my boys were diagnosed with ASD the years were hard. Me and our husband were so alone. Our families took the diagnoses hard. Some were angry with us some embarrassed. Some members were just as scared and worried as we were. But no one had any Knowlege in autism. Those members that were angry would say that I was deceiving the doctors for to get attention. For years they would say hurtful things like I didn’t love my boys if I thought this was true about them. The family was divided and it seemed that we faught at every turn. The embarrassed members seemed to never say the right thing. My husband and I became more withdrawn. We felt alone. Hurt and beaten. We had found support with Doctors and threapists but very little support at schools. In fact school became a battle ground. We never thought it would be. We would pray for better days while fighting to learn to do therapy at home. We would be so alone. No one around us were a family like ours. We seemed to be the only ones going through this new world labeled ASD. I wish we knew others that were in the same boat but we found it hard to get connected. I have found that reading blogs like yours and going to a local support group have helped me with the
    hardest part about ASD, the loneliness. Ive became awesome at delivering therapy for my boys I read books day and night and whent to seminars. I was able to see my first born son return to speech and improve in so many ways. My second born still struggles with ASD. Often trapped in side him self unable to find his words. He still finds it hard to learn but he tries very hard. He’s such an amazing little guy. He amazes me every day. Me and my husband are so proud of our little men. We love them so much. We now have a new little one. A little girl. She’s been fun to have a bit of pink in the house. The boys love her. Her big brothers are very happy with her. Oh by the way I love the tittle the camera does lie because it describes what a picture of our family looks like so well. Thank you for giving the world a glipse at your life. It’s a hard thing to do because it’s hard to find people who can give proper respect to a special needs child. But because your out there I no longer feel like I’m alone. Thanks

  17. Hello from twitter. We’ve had autism kids at church and I sometimes wonder if autism is like ADD in the overused umbrella department when they can’t pinpoint each separate problem. I have 3 sons who are gifted in everything. My other son was preemie with most of these same symptoms. He was initially diagnosed with ADD, then Slingerland tested as learning disabled, then another I forget the name of (where the body’s orchestra doesn’t have a proper conductor), and after years of him coughing, neck stretching and throat clearing, they said Turrett’s. He’s a mostly functional adult now, tested as gifted in all but math. Doesn’t take the medicine because forgetting it can cause death. His problems aren’t worth that risk. Years from now, you may have a different diagnosis too. But years from now, treatment should also improve.

    • Thank you for your comments, interesting. I think D has always had autism from birth, I did a post around that topic “looking back, moving forwards”. I guess the problem is that it is so unpredictable and ever evolving. We have had a great weekend but Christmas, in contrast, wasn’t. Lots of over- stimulation. Had we gone out for a meal yesterday, things would have been very very different! This last week was very up and down too.
      Thanks v much for reading and your comments – really appreciated πŸ™‚

  18. We – me included – could all do well to remember the last sentence in this post. You get your message across so well.

  19. ginacaro said:

    Great post x

  20. Diantha said:

    Hi , Wat alot of stories of parents with autistick kids Jeanette the moment reading your story its like reading my own story , I have 4 special needed kids 1 ADHD and 3 ASD the oldest daugther of mine ia a clasical autist and my twins of 8 are still going trough controlles and obsevations we still do not know wat kind of autism they have but 1 thing is for shure they have it to , its like you say every new situation is a strogle and stangers has to know how to aproach them so not they build an invisable wall arount them , the wourst thing is cause they are so good looking and so cute strangers think they are bad educated , and it is like you say at school it is even wourse cause theachers think we treat our kids bad and tell them to be quite at school .
    But 1 thing is for shure I love my kids just the way they are ……
    Greetings Diantha

    • Me too, for sure. Thanks v. much for reading & commenting, you sound very busy! X

      • Hello Jeannette,
        Got your link from twitter and had a read of your website. I wish your daughter well. I was diagnosed late in life with Aspergers syndrome, I was trapped in what I consider a bad world for many years until I was diagnosed. High functioning people can look normal as I do, but it was all the obscure behavior in my life from other people that eventually caused my mind to literally erupt like no-one else has experienced. I am in the process about writing a story about my life now.
        Thank-you, for following me on twitter.. David

      • Thanks for reading & commenting David, I’d be really interested to read your book when it comes out. I can only blog from my perspective so any additional insights are so useful for me in understanding my D’s perception of the world.
        Good luck with it πŸ™‚

  21. Jennifer said:

    Hi hope u don’t mind me contacting u. I’m a third year student, my final disatation is on ASD and communication problems. The info we get from lectures, books and short observations is great but if I wouldn’t mind sending a reply I would love to hear ur side of these issues as a parent dealing with them everyday thank u for your time J x

    • Of course, happy to help. Are you following me on twitter? If you are, let me know your id & I’ll DM you my email address πŸ™‚

  22. Your daughter sounds so much like my granddaughter. It is “invisible” up to a certain point as you said and there are many things that trigger her anxiety.It can be completely unpredictable.
    You adapt. You plan. You love. As for those who judge from the outside, I am now able to totally detach from them. I focus on little bit and helping her so any negative response just doesn’t make my radar. I simply don’t care. Once and awhile I have an opportunity to share some information and help raise awareness but that is rare. Thank you for sharing your experiences.

    • You’re welcome Laurie & thanks for reading. I never realised how tough my skin could be. My focus is D and T’s welfare and that is it.

      I actually wrote that piece for a magazine but they never used it. It’s one of my favourite pieces now x

  23. Wiser words have never been written. People need to have more awareness and be less quick to judge our beautiful children.

  24. Thank you for reminding us all to be more compassionate.

  25. Shed a lot of light, informative to a topic I know little about and wow! that last statement…had never thought of that…thnx.

  26. Do you mind if I quote a couple of your posts as long
    as I provide credit and sources back to your blog? My website is in the very same area
    of interest as yours and my visitors would definitely benefit from some of the information
    you provide here. Please let me know if this alright with you.
    Appreciate it!

  27. Howdy! Do you use Twitter? I’d like to follow you if that would be ok. I’m definitely enjoying your blog and
    look forward to new updates.

  28. This is exactly it, the amount of times people on fb have commented on my sons pics and been like he’s a big healthy boy, doesn’t seem like much is up with him and I get tired of explaining it. Sure he looks every inch the adorable little boy and he is, his smile is infectious but they don’t see his anxieties or his meltdowns, his sensory problems or the fact he still can’t hold a pencil or eat with a spoon. He’s nearly six but emotionally he is easily much younger and again I get accused of coddling him off family members who just don’t get it. Invisible disabilities do need much more awareness.
    Btw your daughter is a sweetie!

    • Thank you, so true. Autism relies on a greater understanding and unfortunately I’ve found with my family that they just-don’t-get-it. My D is a lovely, affectionate girl who also has autism, it does not have her x

  29. Hello, my daughter is 6 and she got her official diagnosis 2 weeks ago. I have been reading a lot online about Autism, and your blog is the first one I’m commenting on. I am new to this whole thing and I am so glad to have found your blog, along with others.

    • Thank you, I feel a bit honoured! I’ve done quite a few posts on how a diagnosis effected us, so please feel free to have a mouch around. I don’t know if you’re on twitter but I’m @autismmumma on there if you have any questions or just fancy a chat. There’s a contact form on autismmumma.com too.
      Great autism community on twitter, there are some great blogs too. I’ve done a blog roll if you fancy some further reading and I’m planning a recommended-by-parents book list too πŸ™‚

  30. […] My favourite post; The camera DOES lie […]

  31. […] Well, I started blogging regularly in March 2012, having discovered that it was both therapeutic for me and beneficial for others to read. In October last year, the blog also became a website. The main reason is that autism is an invisible disability, looks are deceiving, the camera DOES lie. […]

  32. […] include pictures to demonstrate that autism cannot be seen, one of my first and favourite posts is The Camera DOES lie, it demonstrates that point effectively (even though I say so myself!). I refer to them by their […]

  33. Sometimes the camera does not lie. I used to say that my oldest daughter, Mary, looked normal until she moved or spoke. But that wasn’t entirely true. Sometimes I could see it in the pictures, too. About 75% I can look at a picture of someone (who I don’t know), and I know they have autism. I can’t tell you how I know, but I do. It’s something about the eyes and/or the face. However, most people who aren’t around autistic children aren’t sensitive to that, and even if they do sense something is amiss from the pictures, they don’t know what they are seeing.

    It is happening now in job interviews. Mary goes to job interviews (she is very high functioning and has a college degree), her resume looks great, and she sounds okay on the phone. But when she goes to the interview, the interviewer doesn’t know what he or she is seeing, but someone the social aspect of her autism disturbs them. Her rate of reciprocity is as smooth. She has worked on eye contact for a long time, but it’s not quite there. Reading the social cues does not come naturally. She doesn’t always “get” the interviewers little jokes. She is very serious.

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