I have recently received my first issue of the quarterly, Your Autism Magazine created by the National Autistic Society. It is brilliant and contains some very helpful, informative articles.
I thought in this post I would provide my own opinion on some of the subjects covered in the Summer 2018 issue.
Page 4 – PIP Changes Update
This insert speaks about the discrimination ASD suffers can receive from the government in their PIP applications. This subject is also refereed to on pages 36-39 in the article titled, Fiona, Guy, Ellie and Tommy’s story.
I’m lucky in that I never received any issues with my PIP application. It was accepted and I now receive the average funds. However, I am aware of another applicant, someone whom is very close to me, who has had and is currently being discriminated against by the governments process.
The applicant was previously invited to an interview as their application alone was not acceptable. Being invited to a formal meeting and expected to talk in front of strangers about daily struggles is enough to cause someone on the spectrum a meltdown. This should not be an option which the government are allowed to demand from us. The applicants doctor rang the PIP office and explained that an interview was not an option and was unfair to ask of an ASD sufferer. The government office succumbed and signed the applicant up for the average funds.
However, now, only a year later, the applicant has been informed that a review is necessary. This time the government have not only demanded the applicant attend a formal review meeting but also that they are to see a physiotherapist. The government have ignored the previous advice given by a qualified consultant specialist in Autism and they have also requested a physical assessment – in this applicants case this is completely unnecessary as their Autism does not effect their physical abilities.
The government need to change the PIP application process for those on the spectrum. It is currently unfair and inapplicable for ASD. As Fiona mentions in her article, her daughter Ellie was turned down for PIP as she didn’t score enough points. However, with the current PIP form it is hard for any Autistic person to score enough points. This shouldn’t be the case as PIP is a necessity for many on the spectrum, especially as many workplaces are reluctant to offer jobs or make their environment’s friendly to ASD sufferers. The government need to address the fact the current process is discriminative and work with Autistic experts and charities to make the necessary changes.
For more information or advice on the PIP process visit: https://www.autism.org.uk/pip
Page 15 – Readers to the rescue
In this article two requests for advice are asked by readers of the magazine. I thought I would attempt to respond to these requests and give my own opinion.
“We recently had an Asperger syndrome diagnosis for my four year old. He starts school in September and I am wondering how and when we should tell him properly about his Autism. Has anyone any suggestions they can share?” – Anon via our online community
I would say four years old is a very young age to be told such a huge fact about yourself. I also think at four years old you would not fully understand what your parents telling you you had ‘Autism’ means.
I wish I had been diagnosed from a younger age as I do think it would have been beneficial towards my education. I would advise to inform his school and his teacher – being as open as you can about the diagnosis will be helpful for your son in the short and long-term.
I agree with the other responses featured in the magazine that reading children’s books with and to your son which address the subject of Autism will benefit his understanding. I suggest slowly introducing Autism to your son and in time beginning to imply that he has Autism himself. Make it seem like a normal characteristic – the last thing you want is for him to be feel singled out or scared by the term, ‘Autism’.
Your son has every right to know about his diagnosis but in his own time and when you think he’s ready. Make sure to show him lots of support, love and let him know that just because he’s Autistic, it doesn’t change a thing.
“Can anyone advise me how to request flexible working? I am applying to go from full time to three days a week. Should I fill in a flexible working form or make a reasonable adjustments request? Not sure where I stand with this, as my employer says autism does not fall under the Equality Act.” – Anon via our online community
Every workplace has a legal responsible to provide and care for their employees well-being. This means making reasonable adjustments for valid requests. Asking to go part-time due to Autism is a valid request.
In my current employment I struggled with exhaustion caused by my Autism and the effects of working five days a week, plus commuting. After a year when everything was becoming too much I wrote to my manager and requested my hours be cut down. Work agreed and I now only work four days a week with Wednesdays off to allow me time to rest and recuperate.
I would advise writing to your employer and asking for reduced hours. I would maybe ask your doctor to write a letter too, backing up your diagnosis and the struggles it causes you. If your work refuse then I would seek advice from the National Autistic Society.
Your employers should respect your request and understand the difficulties you face due to your diagnosis. I would perhaps take it to a higher authority if your work refuse your request or consider getting another job, one which would respect your diagnosis and adapt to your requirements. Autism is something which should always be acknowledged by those who have the ability to help us.
Page 18-20 – Your travel tips
I found this article particularly helpful and enjoyed reading about all the ways people prepare their Autistic family members for a holiday; time away from their familiar surroundings and routine.
I thought Ben Gooding’s idea of watching vlogs with their Autistic son Zak depicting others on holiday in the same destination which they were due to go to was ingenious. I also tend to watch videos or view images, I even walk along the simulated streets on google maps so that when I arrive at my destination I know what to expect.
Emma Saysell commented that her family holiday at a centre on the Isle of Wight which runs a programme of activities. I am assuming this programme is set-out prior to arrival so that her son Zach has a schedule of what will happen and when?
Before my holidays I also make schedules so that I know what I will be doing each day. I decide which day I will visit which landmark, where I will eat and also the timings such things will take place. To neurotypicals this probably sounds like a very rigid, stressful holiday but it is a plan being in place which makes the holiday relaxing for my Autistic self.
I was sad to read that Michelle Myers and her family haven’t found the right holiday for them yet, but sometimes it is the imperfections and ‘mad’ moments which looking back make fond and happy memories. Michelle’s advice for holidaying with Autistic children is also very helpful. The point she made, ‘don’t care about what others think’ is important. As long as you and your family are having a good experience then nothing else should matter.
It was also encouraging to read about how Birmingham and Bristol airports have taken steps to make the airport experience more Autism friendly. I find airports stressful and will definitely try the option of a hidden disability lanyard in the future. If it will make the experience easier for an ASD sufferer then I am in support of this scheme. Birmingham and Bristol airports implementing a more Autism friendly approach also ties in with the NAS’s most recent campaign ‘Too Much Information’ mentioned on pages 4, 32 and 33 of the magazine.
If you haven’t already please click to take a look at the following film issued by the National Autistic Society in support of their TMI campaign, along with a blog post written by myself about the struggles of travelling with Autism and please sign the petition or make a pledge.
As I stated previously the Your Autism Magazine is brilliant. It is written created by experts and therefore contains plenty of useful advice. I would highly recommend signing up to receive the quarterly magazine; it will allow you to find out more about the condition, provide instructions on how to access many useful resources and read about others in similar situations to your own. The magazine is guaranteed to make you feel like part of a community.
You can sign up for the magazine here: https://www.autism.org.uk/get-involved/membership/magazine.aspx