Autism Interview #166: Billie-Jade Fox on Inclusion, Transitions, and Autism Lanyards

Image source: NHS

Billie-Jade Fox is an Autistic blogger from the U.K. Her blog You Don’t Seem Autistic is intended as a platform to share her story and be the resource she was searching for during her own diagnosis. Billie-Jade hopes that her posts will be relatable to those also on the spectrum and provide neurotypicals with an inside eye on life with Autism. This week she shared her personal experiences related to educational inclusion, using autism ID lanyards, and the transition to independent living.

What age were you diagnosed and what made you (or your family) pursue an autism diagnosis?

I was officially diagnosed at 19 years old. One evening, an advert appeared on television for Autism awareness. I made a passing comment to my Mum that I thought I shared all the same traits as those on the spectrum. My Mum would probably have ignored such a comment, but at the time my younger brother was being seen by CAMHS, (Child and Adolescent Mental Health Services).

During his treatment, they began to suggest to my Mum that they suspected he may be Autistic. To confirm their suspicions and to give him a diagnosis, my Mum had to go for many meetings where they would discuss his childhood and explain how certain aspects of the stories my Mum would divulge pointed to him being Autistic. During this process, and as my Mum began to learn more about ASD, she began to realise that not only did her son fit into the criteria, but so did her daughter – me.

CAMHS is for those under the age of 18, but they kindly agreed to see me for a one-off session. From that session they advised me to go to my GP and have them refer me to the Autism specialist clinic in Sheffield. I was referred and then had to wait a further year for an appointment.

In the meantime my brother received his diagnosis and despite being told not to, I couldn’t help but hang on to the thought that the word Autism explained so much about my past. My diagnosis appointment lasted for four hours. I talked to the doctor about everything, and Mum was there to add stories and support me. At the end of an exhausting appointment, I received my diagnosis. I was Autistic. I felt relieved, I had fought my whole life to act normal and push myself to be someone I wasn’t. Now I finally had an explanation and a reason to avoid certain situations which didn’t make me feel like a failure as a human-being.

I sometimes wonder, if it wasn’t for my brother, if I would have ever been diagnosed or if I would have continued to mask. According to statistics, one in four children are on the Autism Spectrum. Four times more boys are diagnosed with ASD than girls. This isn’t because ASD is more common in boys, it is because girls tend to mimic neurotypicals and therefore their Autism goes unseen.

You wrote a post about a positive experience you had using a lanyard (that identified you as someone with a hidden disability) in an airport. Do you see any drawbacks to this or similar systems that publicly identify individuals on the spectrum?

I think the lanyard system is a really positive creation and is beneficial to so many. It helps those on the spectrum feel more accepted in certain environments, and it also helps educate members of the public about the small steps which can be taken to help make our surroundings more bearable.

The only drawback is that you can purchase lanyards online. Particularly with the current mask exemption rules, I fear some neurotypicals whom are not actually exempt may be purchasing a lanyard purely so they can ‘get away’ with not wearing a mask. Perhaps it would work better if they were issued by the NHS? Although I do understand the difficulties that may come with this, alongside potential discrimination.

What did you appreciate most about the lanyard system?

The few times I have used my lanyard – mainly in airports – I have loved that I haven’t been made to feel like a burden or a problem. I was concerned that I may receive the usual remarks of, ‘but you don’t look Autistic’ and be refused the extra assistance.

However, this has never happened, staff members have never questioned my condition and have always been so willing to help me, and not in an overwhelming way either.

You get the impression that staff members haven’t just been given new instructions about a system at work, but that they have also been informed why the systems are in place and how they can be so important. You can tell that staff have been educated about ASD and have received training to help understand the condition, which means so much to me on a personal level.

You’ve advocated for inclusion for autistic students. In your opinion/experience, what are the biggest obstacles to inclusion in schools?

I think the hardest obstacle is how we overcome making a mainstream school’s classroom environment accommodating for those with ASD without also disrupting the learning of the neurotypical students. It is a difficult situation, and I’m not quite sure what the solution would be. When I think back, dimming the classroom lights slightly would have made a difference for me. Perhaps a good place to start is to trial small changes such as the lighting and see how they affect the students.

It is also essential that teachers and others working in schools receive mandatory and adequate training about the Autism spectrum. The staff need to be able to assess for themselves where changes can be made to support their ASD students and also be equipped with the knowledge to spot and help when a student is struggling.

In what ways did the educational system you grew up in accommodate your needs? In what areas did it fall short?

I didn’t receive my official diagnosis until I had left education. However, I was undergoing my diagnosis during my final year of sixth form. The school knew I was being assessed for potential ASD, but I was never asked what could be done to meet my needs. Some of my teachers were wonderful and helped me in their own ways, despite the schools general ruling. Other teachers seemed to take the opinion that I’d made it that far so I should be able to make it through the last few months on my own too.

I feel sad when I look back on my education. I think that had I received my diagnosis sooner, I could have thrived much more within the learning environment. I enjoy learning and always looked forward to my lessons. However, as the social side of school increased with age, my ability to pay attention in the classrooms decreased. I was unable to socially keep up with my peers without completely draining myself – this meant that when it came to learning, I was exhausted and found it harder and harder to concentrate in the classrooms due to sensory overload.

Receiving my diagnosis sooner would have helped me come to terms with my need to rest and recharge and helped me learn not to overexert myself socially. I am also hopeful that my school would have given me the extra support I required to learn in a more comfortable environment and perhaps be more understanding when I struggled with the workload.

You wrote that you recently bought a house with your partner and moved out of the house that the rest of your family lived in. What have been the most challenging and rewarding parts of this transition?

The most challenging is definitely the change. Going from a place I have lived for the past fifteen years and where I have a cemented morning and evening routine to suddenly a whole new environment where I am no longer surrounded by my family – who are essentially my comfort blanket – was one of the hardest things I have ever done.

However, it has also been one of the most rewarding. I have gained so much independence and confidence within my ability to cope on my own. I also have a loving, patient, and supportive partner who helps me through when difficulties present themselves.

There are still days where I struggle, so I will go and visit my parents and brother. Even sitting with them for half an hour can make all the difference to my mental state; it recharges me better than anything else can.

My advice for anyone else moving out of their family home would be to take it one step at a time. It is a big change for anybody, not just those with ASD, so don’t put too much pressure on yourself, and remember to stop and ask for support if you feel you need it.

Is there anything else you’d like to talk about that I didn’t ask?

Just that I think the work you are doing to help advocate ASD is wonderful… thank you for helping to give those on the spectrum a voice!

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