The Autistic Scale

18 February 2019

Dear Friend,

I wish I had a euro for every time someone has responded to the statement, I have a son with autism with:
…but he's not that bad
…but he's high functioning
…but he's clever?

People with Autism are viewed by many as sitting along a sliding scale and autistic people are referred to as High or low functioning or as having mild or severe autism. Perhaps a need to quantify something is just part of the human psyche?

Autism charities and societies have recently started to use the colour spectrum in their logos. I welcome this move! Autism is not a linear scale. Autistic people can have strengths and weaknesses in different areas on the spectrum that is why no two autistic people are the same. Having the spectrum more in the public eye may help to reinforce this message. 

Mild autism does not mean that someone experiences autism mildly. It does not mean my son doesn’t need support. Always trying to fit in with the neurotypical world can be exhausting for my son. Mild autism means that you need to make some accommodations to support the person!

I would also like to point out that Severe autism does not mean that someone is of low intelligence. Many non verbal autistics were severely underestimated academically until technology gave them a voice and enabled them to prove otherwise.

People often assume my son is high functioning and so won’t need any accommodations. When things do get too much and he reacts or makes a social faux pas they are shocked. I don't mean just strangers. There will always be the people who stare, like the rude lady in the airport queue or the couple whispering about us in the restaurant.  But when friends or extended family members  judge our son’s behaviour and our parenting skills, it feels like the ultimate betrayal and can permanently damage important relationships.

Let’s challege this thinking! Instead of asking how autistic someone is we should instead be focusing on what accommodations we need to put in place to better support them. If someone tells you their child has autism ask: What can we do to make them feel more comfortable here? Be part of the solution not part of the problem.

A Glimpse into Flying

11 February 2019

Dear friend,

Whilst patiently cueing for passport control, I watched priority travelers whizzing through their separate section. I kept the boys busy talking and handed out sweets. I was trying to keep big lad out of the crush and in a safe space, as much as possible.

Getting on the plane customers were given priority: disabled and elite members. We waited while people, who should know better, jostled for position with me my 2 kids and 3 bags. The whole situation shed light on my sons invisible disability. Ok he wasn't freaking out but he was uncomfortable, and exhibiting stressed behaviours; repeating the same question, pacing, fidgeting. What would make this better for him?

As an EXPAT we are regular fliers, visiting my family in England a few times a year. My big lad is used to flying and actually enjoys it. He has been flying since he was 3 months old. But, flying can be a very stressful experience for someone on the autistic spectrum. Especially at busy times of the year.

My son finds it extremely difficult to be in unfamiliar situations and in crowded areas. He has super sensitive senses and struggles with the lighting, sound and amount and proximity of people in the airport.

I don't want to highlight my boys disability. I don't want him to be given a high visibility coat or special card to wear around his neck. He doesn't want to feel any more different. I just want to reduce his stress (and truth be told mine too). How hard would it be to make invisible disabilities a priority?

Sadly many autistic families choose not to travel!

I have never considered myself a campaigner but after this difficult experience and spurred on by reading about changes made at airports in the UK I decided to mail Schiphol airport and KLM. I urged their care teams to begin providing support for people with hidden disabilities.

Amazingly my letter landed on the desk of a staff member who had an autistic daughter. He started a project, Flying with autism and in the last 2 years has made real changes for autistic fliers at Schiphol. He introduced us to the DPNA code (Disabled passenger needs assistance). You can have this code applied to your ticket and then receive assistance at the airport when you fly.

Write the letter. You could be the one who helps make a real difference!

#PointShoot February

4 February 2019

Do you love making photos of your family? Do you like to record the everyday memories you are making? Then #PointShoot could be the linky for you. Come and share your photo story posts with me. 

You can share days out snaps or a fun, special, or touching moment from your week. It can be one photo (including Instagram posts) or a series of shots with words or without.

This Month's featured post comes from @susankmann

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A photograph is the pause button of life.

Link up your pictures!

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Photo Diary January

Dear Friend,

I love capturing the ordinary moments and special times with my camera, looking at our life through a lens gives me a clearer focus. Here I take a look back at some of my favourite moments from the month. 

 Now over to my photo diary... Happy days!

There are many more ordinary hours in life than extraordinary ones. We wait in line at the supermarket. We spend hours commuting to work. We water our plants and we feed our pets. Happiness means finding a moment of joy in those ordinary hours. - Haemin Sunim 

This month I am grateful for...
  • Family walks 
  • A new phone meaning I can make selfies again!
  • Living near a beautiful city
  • Saturday evening cinema trips
  • Very kind staff making an orthodontist visit for big lad a success
  • Evening walks in the snow
  • Family dinner at the Eetcafe
  • The boys just fitting on the sledge together
  • My big lad being more settled 
  • Saturday morning cuddles with my little man
  • Time to work on my book
  • Having a wonderful dog
  • Eating fresh, thick cut chips in Leiden
  • Facetime and ipads making contacting my parents super easy
  • An afternoon exploring Leiden by bike and taking some shots for @my_dutch_angle

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