In this World Autism Awareness Day blog, ADUK ambassador Noah talks about some of the challenges his autism brings and the huge difference his assistance dog Moose, trained by ADUK member organisation Autism Dogs, has made to his life.
What life looks like for someone with autism is going to be different for each and every person you ask. For me, my autism means that I can struggle with emotional and physical regulation, as well as being hyper-sensitive to sounds and smells. On a larger scale, autism means that I need to over plan my life to make sure I have the accommodations and as much information as possible about what my day is going to look like, and changes in these plans can be impossible for my brain to comprehend or adapt to.
It also means things like audio processing is difficult for me – multiple layers of sound often mean I can’t hear anything at all. Sensory overload isn’t just being sensitive to sounds and smells for me—it means that if the lights are bright, there are multiple layers of sound, and there are multiple smells all at once, my brain shuts down. This is neurological function. It means even though my eyes are open, my brain cannot filter or see what is happening in front of me; it means I cannot think or speak in full sentences, and often a large amount of environmental sensory input means I am sick. My body physically reacts by being sick – as if I were in pain.
Sometimes people may not understand why an autistic person might wear headphones/ear defenders, but what they don’t realise is that our brains are different, and actually what sounds normal to you can be very physically painful for us.
Before I was paired with my autism assistance dog, Moose, my life was very insular and full of anxiety. I wasn’t able to go out by myself, and even with my most supportive and comforting parent, the fear and anxiety were crippling. Trying to get out and have a normal life was absolutely exhausting, and for multiple years every time I left the house I was violently sick. Sick to the point that I would often burst blood vessels in my face and eyes. Inside the house was also very difficult. I struggled with sleeping and often would sleep every other day and could only fall asleep from pure exhaustion. This meant I was constantly tired, and this worsened my other symptoms, like sensory processing, focusing, staying regulated, etc.
Routine was also a very difficult thing for me to stick to, and with no purpose or accountability in my life, it became much too easy to just stay inside. But I didn’t want to stay inside. I wanted to have friends and to go to restaurants, the theatre and cinema. I wanted to go on walks and hikes which eventually ended in the pub for a cheeky drink. I was desperate to have a normal, independent life. My self-confidence and independence were very low, and I didn’t see a way for me to access any more support or help. Then, in walks Moose…
I would love to say it was love at first sight, but being autistic, welcoming a new person into my routine and home was difficult. It was a lot of change and a lot of new steps I had to think about. I had to think about waking up and feeding him, making sure there was always fresh water, letting him out to the toilet and going out and taking him out on walks even when my anxiety was extremely high. Slowly but surely these things formed a new routine that meant I was up and out of bed to feed him, up and out of the house to walk him and had accountability that someone needed me. This paired with the fact that on our first night together Moose helped me sleep almost instantly, and my sleep has been ‘normal’ ever since – this has meant that as a daily experience, Moose has made sure that I have had a good night’s sleep and I’m waking up refreshed; I’m up and dressed and out of the house, ready to start my day.
When Moose was trained, he was trained for 8 different tasks that mitigate my disabilities. He is trained in public access, which means he can come with me into all public spaces and assist me in a well-behaved and supporting manner. Public access training involved Moose learning how to happily settle in busy places and being desensitised to things like public transport, loud and unexpected noises, exciting distractions, walking side by side with me, and ignoring food on the floor. He is also trained to wake me up in the morning to the sound of a specific alarm and reminds me to take my medication to the sound of a different alarm.
He is trained to respond to meltdowns and me being upset and to interrupt any harmful stimming or sensory-seeking behaviours – things like skin picking, hair pulling, biting the inside of my lip, and scratching. When he sees me do any of these things, he will come over to me, nudge my hand or boop my leg, and then go get a toy or ask for scratches – this can help distract me and remind me of the harmful things I am doing. Moose is also trained in freeze response – often I can zone out and physically and mentally freeze, and this can take hours off my day. Moose is trained to recognise this change in me, come over, and bring me back into the room. He is trained in deep pressure therapy, which means he can put all or some of his bodyweight onto me – this means he acts like a weighted blanket and helps to regulate and calm my nervous system.
On a day-to-day basis, Moose and I attend music conservatoire and I am studying for my master’s degrees. Before Moose started my masters with me, my attendance was very low, and my ability to stay in long lectures was limited. Now Moose and I have our routine; my attendance is as high as I think it could possibly be whilst still obviously being autistic. I am engaging in wider curriculum, and when professional opportunities present themselves, I am taking these opportunities, and I feel like my career path is back in reach.
As a musician, concerts and theatres were a massive source of joy for me, but due to the inaccessibility of these events, I always missed out. Autism Dogs Charity, during Moose’s training, desensitised Moose to live instruments and took him to concerts. This means he is super relaxed and confident being in these venues, and I am able to take him and experience live music again. Our biggest achievement has been seeing Stravinsky’s Rite of Spring at the Bridgewater Hall.
Having Moose by my side has meant my social life has been able to be a priority for me again. I am able to travel and visit friends who are dotted around the country and recently stayed in a hotel overnight by myself, which enabled me to see friends. Having Moose has meant that I am a part of the assistance dog community, which I have found to be very supportive – I have made numerous online friends and have met up with many assistance dog teams. Meeting other disabled people and assistance dog teams who understand what life looks like with an assistance dog has been game-changing, and I have never felt more seen.
The difference Moose has made to my life, and subsequently, my family’s lives is unbelievable. The person I am able to be now versus the person I was before Moose is shocking. Moose has retaught me and my nervous system about what we can and can’t do. I no longer fear going out, going to restaurants and meeting new people. These things are still difficult and require planning, but they are no longer totally inaccessible.