World Autism Awareness Week – my Sister with Autism

I hope most of you have been made aware through one way or another that the week of 26th March to 2nd April is World Autism Awareness Week. I’ve seen several fantastic fund raising schemes this week to raise funds for the National Autistic Society, which is such a worthwhile cause, so well done to you all!

Autism is a bio-neurological development disability which generally becomes apparent before the age of three. It impacts the normal development of the brain in the areas of social interaction, communicative skills and cognitive function. Individuals with autism typically have difficulties with both verbal and non-verbal communication and social interaction.

So why is this cause so close to my heart? Well because I have been living with a family member with autism for my entire life! I am the middle one of three Sisters and my older Sister, Lindsey (aka “Lindsey Pinsey” or “madam” on some of her stroppier days!) was diagnosed with autism at around four years old. Officially diagnosing her was no easy task – Lindsey is 39 this year, and so back then, autism wasn’t very well known of, and was even more rarely diagnosed. That aside, my Mum visited a total of 26 doctors before Lindsey was finally diagnosed by the 27th professional she met, who was a psychiatrist! Hard to imagine these days isn’t it?

Mum wasn’t very well treated during her attempts to find out what was wrong with Lindsey, which is why she ended up being passed from pillar to post, and doctor to doctor. As Lindsey was my Mum’s first child, many professionals put her worries down to being an overly concerned mother, and when Mum tried to explain that Lindsey would cry all the time and sounded like she was in pain, my Mum was told “well, babies do cry”! The lack of knowledge about autism at this time and the lack of help Lindsey received undoubtedly made a difference to Lindsey’s development. Children with autism do have the ability to progress, but early intervention is key, and unfortunately this is something Lindsey didn’t receive from health care professionals when she needed it most.

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Linzy Pinzy

Lindsey went to a main stream school, I don’t know how she felt about school as it isn’t something she ever talks about nowadays. ¬†It is pleasing to see that there is so much more choice these days for parents as to where to send their children to school in order to get the support they need, and specialist schools seem to be becoming more and more common, which is great.

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Lindsey currently lives in supported accommodation with three friends she has known for a very long time. They have rota’s to get all the house jobs done, including the washing up and cooking the dinner, but there is always someone there to supervise them. It is great that she is part of an arrangement which encourages her to be as independent as possible every single day. During the daytime she catches the bus and goes to a day care centre where they undertake all sorts of activities, including planning for the annual Christmas musical that they perform for friends and family at the beginning of December!

She comes home to visit once a month and stays at Mum’s house from the Friday to the Sunday and very recently has started spending one of those nights alternating between me and my Sister’s houses too. Until she started doing this I never really understood what Mum meant when she said it was tiring having Lindsey at home, but it really is! You have to keep an eye on her all the time, not because she will hurt herself but because she’s off wondering and opening cupboards and drawers and finding treats I’ve hidden away for special occasions! And don’t even attempt to leave the washing machine and dryer full of clothes! She will be in there trying to sort them all out and finish them off! Not got any washing liquid to finish the washing? Lindsey doesn’t care! Not got enough to put a whole load in the dryer? Lindsey doesn’t care! Very expensive designer item that can’t go in the tumble dryer? Lindsey doesn’t care! In the dryer it will go! Like I said – madam!

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This isn’t because she wants to upset anybody, it is because it is simply part of her routine. This is what she does when she is at home, so the small fact that it is someone else’s home is of no matter! The first weekend she came to stay with us, we said we would have a takeaway as a treat. I told her she could choose and she said she wanted a KFC and so it began that every time she came to stay with us for the night, she had to have a KFC as it became part of the routine. At my Sister’s house it is fish and chips! I think she’s got us wrapped around her little finger!

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Big sis and little sis!

We haven’t started doing it this year yet because the weather has been so bad, but when she is home for the weekend and the Spring and Summer starts to arrive, we do take her out on day trips too. We’ve been to all sorts of places over the years but she especially enjoys the farm parks with all the animals! She seems to enjoy herself when she is there but doesn’t ever say much at the time (or for several months after that for that matter!)

I think the lack of communication is the hardest thing to cope with. Even if she reacted badly or inappropriately to something, it would make things so much easier if she would talk to you about it, tell you how she felt, rather than the emotions building and building and then eventually turning into a meltdown. We have had some bad experiences of visiting some places which were either louder than we had expected, or involved a lot of singing and dancing and crowds of people. I don’t want to dwell on them because, even after all this time, my Mum, my Sister and I do find them overwhelmingly upsetting – in particular, if the meltdown is at a place Lindsey had asked to go to in the first place! Even after all these years we are learning the hard way about things Lindsey does and doesn’t like. Lindsey reaching meltdown is not a good position to find yourself in – she has violent and wild outbursts and will run off without considering traffic or people around her, and she is so incredibly strong! There’s no chance of physically moving her or restraining her in these situations so she doesn’t hurt herself once she has reached this stage. Luckily, as we learn more about the things that Lindsey dislikes, these meltdowns have become far fewer.

The second thing I find really hard is how Lindsey compartmentalises every aspect of her life. If it makes it easier for her to get through every day then of course this is fine, but she gets very anxious and upset when two separate sections of her life cross over. She has particular rules and behaviours for her “life” in the supported living house and other rules and behaviours for her “life” with us. So, in a nutshell, some things are acceptable in one place and not the other. This is hard to deal with when she merrily goes on holiday and to the cinema with her friends, but finds these exact same situations with us to be too stressful and upsetting. It’s hard to deal with but as long as she is happy, I should be happy too.

I think it’s great how things have come along in the past three decades, and how autism is now a globally recognised condition. Check out some of these interesting facts about autism:

  • As if it isn’t bad enough that autistic people have to suffer with autism itself, autism sufferers often also suffer from many other medical conditions, including but not limited to asthma, allergies, epilepsy, digestive disorders, continual viral infections (Lindsey gets these a lot), and feeding and sleeping disorders.
  • Lindsey is rarer than most – autism is diagnosed in four times as many males than females.
  • Autism is increasing – it is reported that in the United States, as many as 1 in 68 children will be affected by autism.
  • Around 40% of children with autism do not speak at all. Around 25-30% of children with autism have some words early on and later lose them. This was very much Lindsey – when she was younger she was the typical bossy older Sister and on some occasions you would struggle to shut her up! As she has become older, her speech has become less and less, which is very sad.
  • Autism greatly varies from person to person, and no two people with autism are alike.
  • Autism is the fastest growing developmental disorder, yet is the most underfunded.

So if you would like to learn more about autism, or donate to such a wonderful cause, you can find more information from the National Autistic Society here.

There is a very interesting video on the home page which highlights what autistic people deal with each and every day of their lives – it is certainly worth a watch!

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