To coincide with the release of our February Autism-related data collection, I wanted to explore what an autism spectrum disorder (in this case, Asperger syndrome) was like for someone who has it. Charlotte excellently described the research landscape and I am sure our Scientific Lead Manny will also cover the research and data in more depth. However, as a non-scientist, I wanted to understand what it is like, and how people with Asperger's treat or reduce the symptoms in their day-to-day life. I had a unique opportunity to explore this with a sweet and open-minded family.
Asperger's syndrome is an autism spectrum disorder (ASD) considered to be on the “high functioning” end of the spectrum. Affected children and adults have difficulty with social interactions and exhibit a restricted range of interests and/or repetitive behaviors.
Finley is the nephew of my partner Samuel. He was diagnosed with Asperger’s at the age of 4. Initially, he was diagnosed by Ester, his mum, and a school support assistant who was also a child therapist. It took Ester 3 years to get an ‘official’ diagnosis from Fulbourn Hospital in Cambridge. The signs of Asperger’s which led to Finley's diagnosis included being unable to concentrate/focus, preferring to play on his own, and lashing out at other kids sometimes, even biting them.
Finley is now 9.5 years old.
Above (from left to right): me, my partner Samuel and his nephew Finley
Above: Finley and his mother Ester
What is Asperger’s?
Ester already told me Finley understands he has Asperger’s. In fact, she believes it is good for him to understand his condition and attempts to correct him when his Asperger’s leads to undesired circumstances.
I asked Finley if he knew why I invited him to my house and that I wanted to ask him about Asperger's? Finley said ‘yes’. So, I asked him…
"What is Asperger’s?"
Finley seemed to repeatedly pause saying “well”, “umm”. After around 1 minute Finley said. "Well, people with Asperger’s have difficulties."
At first I thought it is so true but so vague. I smiled to myself (in my head, of course), almost because I expected him to say something like this. It is accurate but doesn’t answer the question in depth. It’s just like countless other conversations and comments from Finley that are technically accurate but somehow missing any feeling or input which would lead to an actual conversation. I also noticed that he did not apply the question to himself directly.
It also dawned on me that Finley’s part of the interview would be very quick!
What is Asperger’s like?
I asked Finley __"Can you explain what Asperger’s is like? What is it like for you?"**
Again, Finley paused, but this time he did not fill the space with “well” and “umm”.
He also answered quicker, in around 30 seconds. Finley said "It’s hard”.
I expected a short reply, but instead of smiling to myself this time, I felt sad. I often forget Finley has Asperger’s. Often he seems just like a normal kid. I somehow had the opinion that Finley was not fully aware of the full impact Asperger’s had on his life. Almost thinking that he was oblivious and it was everyone else who noticed. But this made me realise that he does notice it and that he finds it hard.
I also realised that although Finley was short in his answers, there was so much between the lines, much like a normal conversation with someone without Asperger’s. With just 8 words he had stirred all these emotions, revelations and understandings.
It runs in the family
Ester tells me that Finley’s dad has Asperger’s, in fact it played a big role in Finley’s diagnosis. It was whilst talking to a school support assistant that Ester brought up his father’s condition. That was when things began to make sense for both Ester and the teacher. However, when I asked if anyone else in Finley’s family has Asperger’s, Ester told me that Finley’s grandad from his father’s side showed signs of Asperger’s but was never diagnosed. Ester explained that he would collect random things, he would want to visit his son and his grandson (Finley), but he would not say anything. Ester said it was like being with a statue. He was financially very supportive and clearly wanted to be around people, but would not communicate much verbally.
I did not really ask if Finley shared symptoms with his father but Ester explained that in her experience, the symptoms or traits can differ widely between people with Asperger’s (and other ASDs). She explained that a friend of Finley’s who is suspected to have Asperger’s finds social situations very difficult but is great at mathematics. Finley is not good at mathematics and loves to be around other people. He actively seeks company now.
Touch points with the experts
Ester explained the journey of Finley’s diagnosis in great detail, including his early symptoms as a toddler and lashing out at other kids and wanting to play alone. I sensed Finley's diagnosis was a very long and drawn out process and only achieved by continued persistence. Mostly due to the fact that Finley's symptoms were not always obvious.
Finley has not been to a GP for his Asperger’s for some time and he has never had his genome sequenced or even been offered to. However, he has taken part in music therapy. Ester explained this was quite a common therapy for children with learning or cognitive disorders. She also said that learning to play an instrument gave the children an emotional outlet. It makes sense as I picture a child getting their anger out whilst thrashing the drums!
But as of right now, Finley doesn’t visit a GP for his Asperger’s. Ester takes some control over his condition using his diet and does so completely on her own. Something which still amazes me.
Out of interest, I did mention to Ester how genetic data is used for research and asked if Finley ever had his DNA sequenced if she would consent to share the data for research. The question was new to her and she suggested it would be logical to share the data and she was open to do so. But at the same time, I got the sense Ester was not aware of all the issues or concerns around sharing data. Such as the ability to identify someone or some of the ethical issues that arise from studying genomes. Especially when it is the parents’ consent for the child.
I would like to think that if Finley ever did have his DNA sequenced, Ester would be informed about some of the potential concerns and have things explained to her properly.
The gut brain
One of the main inspirations behind the interview with Finley came when reading Charlotte's blog post on Autism research and the study of Microbiome data and Autism. I already knew Finley had a strict diet, but I did not know exactly what it was and why.
Ester has so much knowledge on this. She already knew about the gut brain and that Finley’s flora was not healthy. She learned all of this herself. In fact, one of the most interesting things that Ester said was that GPs had little nutritional understanding. She told me that most GPs only studied for 1 or 2 weeks on nutrition. She learned it all herself by researching online, consulting herbal experts and regularly visiting a local natural health shop in Cambridge. It seems they have done more for Ester and Finley than any GP.
Ester explained that Finley does not produce the right enzymes to break down proteins found in gluten and diary. This causes all sorts of problems. What I expected was Ester to tell me it caused Finley to have a sensitive digestive tract and tummy ache, but Ester quickly smashed that misconception and told me it had a huge impact on his behaviour. When Ester first began cutting gluten completely from Finley’s diet, the results where noticeable from day 1. Both Ester and his teacher noticed a difference. Finley could focus and he did not lash out at other kids. Ester told me how amazed his teacher was. I sense it was the much-needed solution Ester needed. Before this she confessed dealing with Finley’s symptoms was very hard. In fact, she admitted that she felt like crying some days. It is truly amazing how diet has changed Finley in such dramatic ways.
It’s not just diet though; Finley is also sensitive to chemicals. Not just in food but also bathroom products like shampoo, hair gel and toothpaste. His gut is also sensitive to medical treatments. Ester recounted the time Finley’s colon was completely blocked after having his MMR vaccine.
Finley also has very sensitive skin and liver problems. The most notable reminder of this was when Finley got Impetigo from a local outdoor swimming pool. I recall seeing Finley shortly after he caught the skin infection and his entire chest was covered in blisters. You could see it was very painful for him. The effects of the Impetigo was worsened because of his sensitive skin.
So, it is more than just diet. Finley does have a special diet and eats foods rich in amino acids and takes probiotics to help heal his gut flora, but he also has natural and organic bathroom products and Ester even avoids materials like polyester and other synthetic fibers in his clothing. This is not surprising though as there is a lot of research suggesting skin and gut are very closely linked via the immune system.
So, considering everything Finley has been through and the restrictions he endures to limit the symptoms of his Asperger’s, I was keen to see what Finley thought about the future. So, I asked him a simple question. "What do you want to be when you grow up?"
In true Finley fashion, he pauses and seems to search his brain for an answer. "YouTuber." he says after 15 seconds. The quickest answer yet.
My partner was close by and pointed out he also likes writing and drawing comics. After which, Finley also suggested "maybe write books!"
To no surprise, that was the end of Finley’s interview. I realised that it was perfect and I didn’t want to pry more from him. It felt fitting to allow him to answer however he wanted.
Advice from Ester
I wanted to finish up by asking Ester if she had any advice for a parent of a child with Asperger’s. I imagine that someday someone may come to this blog who is struggling and has an autistic child pre or post diagnosis. Therefore, I wanted to share her teachings.
Don’t stick with just one doctor. When Ester first visited the GP to get advice on Finley’s almost constant nausea, the GP told her to make him toast and butter. Obviously, this was the worst thing considering Finley was intolerant to both gluten and diary and these intolerances were not only making him feel sick, but also effecting his focus and anger towards others.
Go organic and natural. Understand what additives are in your food that may be causing a reaction. Ester suggests cooking yourself and use fresh and organic produce.
Parents always know – you need to admit it. Possibly the most important tip in my opinion. Ester suggests that a parent will know if their child has a problem. Don’t overlook it in fear, investigate and be open to admit - your fears may be real.
- Do your own research. Challenge what the doctors say, look at alternatives and explore other treatments. Asperger’s like many autistic disorders is a spectrum with different people showing different traits and symptoms. You may find diet and environment can do a lot to help alleviate those less than desirable effects.
Listening to Ester, I understood that apparently GPs are often constrained by what they studied. Especially in her experience. But with new developments happening in medicine, genomics and alternative medicine, surely this data should be linked with clinical data? This may provide better advice to parents like Ester. I know it’s not always so straightforward, but it seems like Ester has, over time, managed Finley’s condition herself and often sought her own treatments with research. Medical developments are happening all the time, I would like to encourage everyone to keep studying, there is always something new being discovered.
There also seems to be a lot of internet advice on herbal remedies and homeopathy. But Ester knew very little of genomic research. It concerns me that this valuable data seems only accessible and understood by those who take and research it. It would be great for normal everyday people to learn about genomics, what gene variations mean and how they can contribute to science if they have their genome sequenced.
Finally, it’s very clear that people with Asperger’s view social situations very differently. There is some sort of hidden rule of conversation that we instinctively learn growing up. A way of continuing conversation by drawing on experience, knowledge and emotions. However, people with Asperger's see social situations so literately. A question can be answered with a simple one-word answer. It may seem like they do not understand the question, or perhaps do not want to talk, but I think they do, I just think the answer seems logical to them and there is no need to elaborate.