“Because of Barnardo’s, I saw immediate improvements in almost every aspect of my life”: Caleb’s experience

Caleb’s experience of being diagnosed with autism 

“As for how I got diagnosed, it happened completely by chance as I was with CAHMs for anger management classes. I feel like a lot of people who get diagnosed with autism go into anger management first because they might not like certain things, or they have sensitivities to loud noises and might end up being more annoyed than others. They find that anger management doesn't work because you can't change autism symptoms this way. You start to think that something else is going on under the surface and that’s how it happened for me.” 

“Nothing in anger management was working for me – they put me through several psychologists and tried many methods. They often found that I was giving little emotional reactions to things, and I remember being told that I don’t have any compassion or capacity to care for people which wasn’t great. I was 14 at the time.” 

“Eventually, after ruling out some other conditions, they sent me to the autism team which took about eight months. When I finally got in contact with the autism services, it took another two months before I had an official diagnosis.” 

“The autism services didn’t help me that much even after I was diagnosed. They would send me a couple of messages per week and invite me to groups that felt generic. The groups were run online because of Covid, so they didn’t feel personalised, and they would talk to everyone the same.”  

“Soon after I got diagnosed with autism when I was 16, I was put in touch with Barnardo’s through the autism services.”

“When I finally was referred to Barnardo’s, there was a drastic difference. I remember feeling confused about why Barnardo's isn't the first service they send you to for autism, because for me, other autism services didn’t help. But as soon as I got in contact with Barnardo's, I immediately got into a support team that helped me.” 

“I think there should be a lot more funding going to Barnardo's autism services because of the fact that they can actually take the time to help children individually.”

Support from Barnardo’s

“The first thing that was drastically helpful when I came to Barnardo’s was the one-to-one support. At the time when I was introduced to Barnardo’s, I was homeschooled, and I didn't really have any qualifications. So, I joined the transition and inclusion programme, which helped me get qualifications,” he explains. 

“I had one-to-one sessions with my project worker, Caroline, who helped me access a course called College Connect to get my qualifications. She also helped me get summer work where I designed cards and did some barista work. That was very helpful because I hadn't really talked to many people when I was homeschooled, so the experience helped me better my communication skills which helped when I started the course.”  

 “I was also involved in Barnardo’s groups with other young people with autism which was also helpful. We would go on residential trips, go to events, and places like the movies which definitely helped build my social skills. It gave me an idea of how to communicate with other people, learning difficulties or not, and how to explain why people with autism do certain things or act in a certain way to people who don't have learning difficulties.

“I’ve also had some volunteering opportunities with Barnardo’s which has really helped me. I sat on a few interview panels recently to help hire someone to the service. It was great to be able to give my input as someone who has autism.”

“Even when I wasn’t doing the one-to-one support anymore, Barnardo’s continued to support me. I wasn't receiving any benefits at the time and didn't even know there were any benefits I could claim. Barnardo’s told me what I could qualify for and helped me throughout the process. The application is quite difficult, but Barnardo’s made it significantly easier and the money I was able to claim made a drastic difference.” 
 

Battling stigmas and misconceptions of autism 

“I think it’s important to say that there's often a misconception, even sometimes within autism services themselves, that people with autism should all be treated the same universally,” he says. “People can treat autistic people like they’re a child, or really young, even if they’re almost or actually an adult.” 

“I think there are stereotypes that all people with autism struggle with social settings and have trouble socialising, which isn’t true for everybody. That isn’t really the case for me. Because of the stereotypes, people will view me as being less intelligent or less mentally mature so often people will treat me incorrectly.”  

“In my opinion, I think we need to look at the system as a whole. This is a hard problem because it takes too long for young people to be diagnosed, and after you turn 18, you're pretty much thrown to the sidelines, and you have a significantly lower chances to get diagnosed as an adult.” 

Caleb’s advice for other young people 

“I would say to other young people who think they might have autism, do whatever you can to push for a diagnosis. Even if your relatives or people around you don't really want you to, or even if the system isn't great, it's far better to push for a diagnosis when you're younger because when you're older, the chances get smaller. Getting diagnosed means you’re more likely to get the support you need.”  

 “I would also say that it’s important to not compromise who you are as a person,” Caleb says. “Sometimes, there might be times when you have to compromise things, like if your behaviour is affecting other people, for example.  But at the same time, don’t let anyone try to change who you are as a person. You don't have to do that.” 

 *Name has been changed to protect the identity of this young person