Our journey to an autism diagnosis: S's Story

For many families, getting an autism diagnosis can be a long and difficult journey. It can involve referrals, assessments, rejections, long waiting lists and a lot of uncertainty. 

S was diagnosed with autism when he was he was quite young. Looking back, both S and his mum have different memories of that journey and how his diagnosis affected their lives.

The journey to diagnosis

At the age of eight, after years of looking for answers, S finally received his autism diagnosis.

For his mum, getting to that point involved many different professionals. In order to get diagnoses, S saw 1 Health Visitor, 1 Paediatric Doctor, 3 Paediatricians. He was also referred to a number of other services and departments, including a paediatric, audiology, orthoptics, podiatry, speech therapy and physiotherapy.

During pre-school, before his diagnosis, S would watch other children but would not join in with them. 

Then when he started infant school, his mother noticed the difference between S and his peers became more noticeable. And the gap just kept on growing. In a bid to get some support, he was referred to an Educational Psychologist, but the family faced long waits for appointments and uncertainty for the future.

‘Term after term after term with wait’ - S’s MOTHER

His mum remembers feeling disillusion by the process. She would ask questions, but felt that the Paediatrician and Educational Psychologist were playing ‘bat and ball’. 

“The medical and education [support] seem to act as separate entities”

Mum: “. We have to get a diagnosis for evidence to support and receive a Statement of Special Needs, (this was before the Education Authority introduced the Education, Health, Care Plan (EHCP). Whilst at Infant school the Education Authority turned down the School’s application for the Statement of Special needs. We are now stuck in mainstream [school] with minimum support.”

Eventually, after a lot of pushing from his mum, S received a Statement of Special Educational Needs or now known as an EHCP.

How did the diagnosis feel?

Mum: “A relief, I was being believed.”

For S himself, the diagnosis felt different. By the time he was diagnosed, he had already spent years seeing medical professionals, so appointments and assessments had become a normal part of his life.

S: “From the time I was at Junior school, I’ve always known I was different.”

Having a diagnosis helped to put some understanding around those differences and his experiences.

Growing up at school

‍School was not always easy for S. Already feeling ostracised from his peers, he had to undergo a referral to a Dietician to help with behavioural issues. 

S: “I found having a restricted diet was strange and didn’t help at school as it was another thing that made me feel different.”

Were there specific things you found challenging? 

One of the biggest challenges was having teachers who did not understand his autism.

S: The older teachers at school from my point of view didn’t seem to understand me and my autism at all. One teacher thought I was just being naughty when I crawled under the table to feel safe. Mum and I called her the ‘dinosaur’. However, on a positive note, there was a young male teacher who was amazing with all the children in my class and in the year I had him as a teacher I did so much better with my learning and results then sadly regressed the following year when I had an older teacher again who seemed a lot worse than Mrs Dinosaur.

For many of our supported adults, just like S, early intervention and positive experiences with teachers can make a huge difference in feeling seen, heard and valued. 

Finding the right school with autism

S's mum continued to advocate for him throughout his education.

There were further referrals to an Educational Psychologist, with the family again facing long waiting lists. The school initially promised to apply for a Statement of Special Educational Needs but later changed its position.

Eventually, after persistent efforts from his mum, S received the support he needed.

However, when it was time to look at secondary education, finding the right school was another challenge. 

Mum: Mainstream [school] seemed reluctant to take S on. The Education Authority said there were not enough places or money to send S to a Special Needs School. [They] Suggested a Behaviour School, we visited. We said NO.

After continuing to push for appropriate support, S eventually secured a place at a special needs school.

For his mum, this was a turning point.

Mum: “I could now relax because this school suited my son.”

S: “When I first started Special Needs School in Year 7, I found the transition phase difficult and getting used to the teachers and environment. Then I settled in and I was fine.”

It is of the upmost importance for families to continue to advocate for themselves and their child. Despite the suggestion of a Behaviour school from the Educations Authority S's family made the right call by looking for alternative options that better suited S's needs.

Moving from school to college

The transition to college brought similar challenges.

S again found it difficult to adjust to a new environment and new people.

S: “Again I found the transition phase difficult and getting used to the lecturers and the environment. I felt the support was much worse than what I was used to at school.”

Despite these challenges, S achieved something he is particularly proud of. He completed a Level 2 IT course and achieved merit.

S: “This is the only thing at all the colleges I feel I achieved and felt proud of.”

Life as an autistic person

When asked about some of the hardest parts of being autistic in a predominantly neurotypical world, S described feeling misunderstood. A sentiment shared by many of those that have additional needs.

S: “I feel a lot of the time I’m not understood and people misinterpret what I am trying to convey as I come across as a confident speaker.”

For S, this highlights that how someone appears on the outside does not always show what they are experiencing or what support they may need.

The positives of being autistic

Despite some of the trials and tribulations around getting a diagnosis and adequate support, S can still reflect positively on his life and makes him unique. 

S: “Attention to detail. I pick up what other people miss. My view of the world is very simplistic, right and wrong, good and bad.” 

And when asked what brings him the most joy in his day-to-day life, S kept his answer simple.

S: “My dog, my Mum and brother.”

What message do you have for someone newly diagnosed? 

S: Getting an autism diagnosis doesn’t change who you are. You’re still the same person you were before your diagnosis. It can simply help you understand yourself better — why certain things may feel difficult, why you might experience the world differently, and what kinds of support works best for you.

S's story shows that getting an autism diagnosis and finding the right support can take time. It can involve many different professionals, long waits and having to advocate strongly for the support that a child needs.

It also shows how much difference the right people and the right environment can make.

For S, the experience of having a teacher who understood him helped him immensely and finding a special needs school that suited him gave his mum the reassurance that he was in the right place.

Most importantly, S's experience reminds us that every autistic person is different. Someone may appear confident while still feeling misunderstood. They may find transitions difficult, but thrive once they have settled. And the things that make someone feel different can also be important strengths.

Sharing experiences like this can help other families feel less alone and encourage greater understanding of the different ways autistic people experience the world.

If you would like to share your story on the halow 'Help & Advice' hub, in the hopes of helping  anyone seeking authentic perspective, please contact us on Fundraising@halowproject.org.uk.