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02 April 2019

Autism – a personal perspective by FSB’s David Miles

On World Autism Awareness Day 2019, FSB interviews David Miles, an FSB member, and his wife Jane who are the parents of two children with autism. Sophie aged 13 and Alfie aged 10.

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How does being self-employed work alongside being the parent of two children with autism for you?

Dependent on what the business does, it can allow more flexibility regarding appointments with schools and professionals, and therefore allow you to maximise how supportive you can be.

In my case it helps because it gives me more flexibility in terms of how/when I work. Sophie's autism means it is not an option for her to get the school bus, so being able to help my partner Jane with the school runs is useful. However, there are some self-employed people who charge by the hour or who have to be onsite with their clients and so, for them, self-employment might actually be less flexible than a job working for someone else.

Was your decision to be self-employed influenced by your family needs in any way?

The decision preceded the diagnoses. But if I had been in employment I would have strongly considered it due to the flexibility required.

Do you think that small business employers could offer work opportunities to people with autism?

Yes, I think any business can to be honest. How one person’s autism develops is unique to that individual and no two people with autism will present in the same way, or have the same needs. However, the size of a small business could be an advantage as the individual may feel they can be more open and receive more support due to the closer rapport between employees and the potential greater level of adaptability of a small business. It would depend on the nature and set up of each small business though as to whether it can easily offer that level of flexibility.

Employers need to understand that these employees will have different needs and different communication styles. For example, our son is very intelligent but if you say to him "put those things away" he won't cope because that's too broad an instruction. You need to break things down into smaller steps - "First put that book on the shelf, now put that bottle in the bin, etc.”

On the other hand, people with autism tend to be very detail-focused so there are certain tasks where they could perform much better than neurotypical employees. And some of history's greatest inventors/scientists/writers/etc. are known or suspected to have been on the autistic spectrum.

So they could be a real asset to a small business. But equally to any other kind of business too.

What do you think of the current awareness about autism?

I think that whilst there is a far greater knowledge of this neurological condition, due to recent educational campaigns, there are also a lot of stereotypes flying around. Every autistic person is unique in their needs, as we all are, so people need to be aware that they should approach this in a person-by-person way and not make assumptions.

Our daughter can hear electricity in the walls and is an amazing writer, whereas my son can taste the difference between different brands of milk and eggs, and (aged 10) has phenomenal skills in using technology especially in the fields of music and video production. Autistic individuals whether high functioning or not, all come with their own amazing skills so an open and non-assumptive approach is key.

Understanding of the condition is probably better than it was a few years ago due to increased media coverage, celebrities with autism, etc. But I suspect there’s still a long way to go.

What support is out there for people in your position?

Because every autistic child’s profile varies so much there is no one set route of support. There are often associated mental health issues and the waiting lists for these are both a postcode lottery and severity lottery (our daughter did not get help when initially self-harming as it was ‘not serious enough’ but once she started with knives she got support).

These variations are mainly due to limited budgets and a lack of qualified professionals. Our main support has been a phenomenal local charity, SNAP (Special Needs and Parents) who have provided a wealth of support from holiday clubs to counselling for parents of newly diagnosed children to yoga sessions for anxiety.

The lack of support and understanding at school level is a great concern - again this is too variable potentially due to the variable approach and the likelihood of high functioning children to try and mask their condition so they can fit in. I think things need to improve at those levels, else the child will have to deal with unnecessarily high levels of anxiety at too early an age which has a detrimental impact on their ability to then access jobs as an adult.

In terms of help from schools, NHS, etc. I think it depends how determined you are. We get a fair bit of support but that's only because Jane has had the time and intelligence to become an expert in all things autism-related and because we are both able to argue our case effectively with teachers, healthcare professionals etc.

And that's another area where the flexibility I get from being self-employed is useful - because I can go into the school at short notice for meetings regarding Sophie.

Do you think more could be done to encourage employers to employ and support people with autism?

Information sharing and awareness raising of the benefits of employing people with autism spectrum disorder (ASD) and advice on how to make adaptations for them would be good.

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David Miles is an FSB member and is FSB’s Finance Director.

If you are an FSB member and would like any personal advice related to this article, you can contact FSB Care which offers health and medical advice to FSB members.

Further information about autism is available from the National Autistic Society.