“Trust yourself”: one mum’s journey to understanding her daughter

Gara’s daughter was struggling, and the family were facing a seven-year wait for an assessment. This is their story of looking for answers, and of what changed when they finally felt understood.

“You have given meaning to her behaviour, not an excuse for it.” Gara, parent

A little girl who felt everything deeply

She has always felt her emotions intensely. In her eight years, her family can count only six days when she hasn’t cried. She found friendships and social situations hard, and her strong sense of right and wrong made relationships with other children particularly challenging. Busy, noisy events that other children enjoyed, like dance shows, left her completely exhausted, and the distress that followed could be overwhelming.

“As parents, it has been heart-breaking to watch her struggle with feelings so big that she doesn’t always know how to manage them.”

As the family grew more worried about her emotional wellbeing, they sought professional support. It was through this that someone first suggested she might be autistic and/or have ADHD traits and encouraged them to look into an assessment.

“We weren’t looking for a label or an excuse for her behaviour. We wanted to understand why life sometimes felt so difficult for her, why she experienced everything so intensely, and, most importantly, how we could help.”

Quiet doesn’t mean coping

At school, she was quiet and well behaved, so her struggles were easy to miss. When Gara shared her concerns, she was often told that girls are just more emotional, and at times she began to doubt herself. But she never wanted her daughter to grow up believing her feelings were just her being dramatic.

“Our daughter is quiet, follows every rule and never wants to cause trouble. But that doesn’t mean she is happy.”

During the assessment, the family found that the first school report didn’t reflect the concerns they had raised for years. Many of her difficulties, including the break times she spent alone, had never been recorded. It took several meetings to get a report that told the full story. Throughout, The Autism Service team understood the family’s frustration and supported them, recognising that the first report didn’t reflect the little girl they were assessing.

Choosing The Autism Service

The family were told their daughter could face a seven-year wait for an NHS assessment, and they felt they couldn’t wait that long while she was struggling. They looked into their options, including Right to Choose, and decided to go private. The Autism Service was one of the most highly recommended providers they found, and payment plan options made it possible for them to go ahead.

“From our very first conversation, we were treated with kindness, patience and understanding, even when we were trying to find a way to afford the assessment. We never felt pressured, only supported.”

The family also valued that the team never promised a diagnosis. Instead, they promised understanding, guidance and recommendations, whatever the outcome.

The assessment

Their daughter had a combined assessment for both autism and ADHD. Her parents and school each filled in detailed questionnaires, giving the team a picture of her at home and at school. Gara then had two interviews with clinicians about her development, and her daughter was seen face to face in clinic for an observational assessment (ADOS-2) and a computer-based attention test (QbTest). The multidisciplinary team then looked at everything together before talking the family through the outcome and the report.

Gara describes a team that was kind, patient and genuinely interested in getting to know her daughter as an individual. The family were given time to tell their story without being rushed or judged, even when they went off on tangents, and nobody ever cut them short. The clinicians understood that a child can seem settled in one setting while struggling enormously in another. For her daughter, it was a chance to be understood and accepted for who she is.

“For the first time, I felt that we didn’t have to prove how much our daughter was struggling for someone to take our concerns seriously.”

What’s changed

Since the assessment, the family have been reading recommended books, talking together about feelings, and learning how to make everyday life easier for their daughter. Above all, they now understand that her behaviours have meaning, they are her way of communicating about how she experiences the world.

“We finally have a direction. We have answers to so many of our worries, practical recommendations and, most importantly, a clearer understanding of our daughter.”

Her school has met with the family and is putting support in place, and the people who run her activities outside school are finding ways to help her keep enjoying the things she loves without becoming overwhelmed. For the first time, the family have professional recommendations to share, rather than relying on explaining what they see at home.

Not “can’t”, but “how”

For Gara, a diagnosis was never about limiting what her daughter can do. It’s about giving her the tools to do whatever she wants, without becoming overwhelmed. A recent trip to have her ears pierced showed exactly what that looks like.

In the shop, two staff members came over and were about to touch her. Gara saw her daughter’s face go blank and knew she was overwhelmed. She calmly explained that her daughter doesn’t like being touched unexpectedly, and asked them to say exactly where and why they needed to touch her first. Once she knew what was going to happen, her daughter relaxed.

For now, Gara speaks up for her. One day, she hopes her daughter will have the confidence and the words to do it for herself.

“That is what a diagnosis means to me. Not saying, ‘She can’t do that because she is autistic,’ but asking, ‘How can we help her do that in a way that works for her?'”

Looking ahead

The family know there is still a lot to learn, and they are learning together. Gara knows the world may never fully understand her little girl, “but we will, always.” She wants her daughter to grow up knowing she is not difficult, dramatic or wrong for feeling things so deeply. Her biggest hope is that all the work the family has done to have her needs recognised means her daughter won’t have to fight the same battles herself.

“We have never wanted to change her. We love her exactly as she is. We just want to understand her well enough to make her world a little kinder, a little easier and, hopefully, a lot happier.”

Most of all, she wants her daughter to have a childhood filled with more happiness than sadness, and a future where she feels free to be herself.

Gara’s advice to other parents

Asked what she would say to a parent who is unsure whether to seek an assessment, her answer is simple: trust yourself. You know your child better than anyone else, and if you can see them struggling, even when everyone else says everything is fine, don’t give up looking for answers.

Looking back, she wishes she had known more about how differently autism can present in girls, especially those who become good at hiding how much they’re struggling. She also wishes she had known how important it is to make sure every concern is properly recorded from the very beginning.

“Don’t seek an assessment just to find out what your child has. Seek it to understand who your child is and how you can help them become everything they want to be.”

If your child is struggling and you’re looking for answers, we’re here to help. Get in touch with our team to talk about whether an assessment is right for your family.