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Opinion: 'We battled to have our son's autism diagnosed - how might the delay have affected him?'

Mother’s six-year struggle of appeals, complaints and a High Court case to get her son the help he needed.

Anonymous

TWO YEARS AGO, our son was suicidal. He was 11 years old. It’s impossible to describe the emotions that hit you when your child tells you this.

It’s not something you expect to hear from a child so young and you’re so unprepared on what to do or say in that situation. We tried to stay calm for him, but we were devastated.

I couldn’t sleep. I kept checking him at night, I was terrified he might go through with it when we weren’t watching him. He had no friends and never felt like he fit in.

  • (Read more here on how you can support a major Noteworthy project on the delays and waiting lists for public autism spectrum disorder assessment.)

As a toddler he was obsessively interested in superheroes, could tell you so many random facts about them. He never sat still but we just thought he was a bit hyper and would settle once he got into school.

He was very articulate and spoke so eloquently. He could talk for hours on the topics he was interested in but would never hold a normal two-way conversation.

We knew nothing about autism at that stage. No one teaches you these things. We didn’t realise that these and other little things we noticed were classic signs of autism.

An undetermined impairment

When he started school the teacher and principal advised that we send in an application of need to the HSE. That was March 2012 and he had just turned 5 years old.

A few months later, he was seen by a HSE psychologist and they sent me paperwork stating he had an “as yet undetermined impairment”.

It was recommended that he have a team assessment with the Child and Adolescent Mental Health Service (CAMHS). A few weeks later we were advised that CAMHS did not accept the referral but would re-examine it after we attended a parenting course. He was discharged from the service.

We immediately found a six-week parenting course, completed it and my son was put on a waiting list to be seen by CAMHS. It took two years waiting to be seen by them and he received five sessions.

They advised me to read up on autism as that’s what they were leaning towards, but they didn’t do autism assessments and I would have to re-refer him for another assessment of need.

He was then discharged from their care, and we had to start the whole process again. It was now 2015, over three years after we had started this journey and we still had no answers.

I hoped the wait wouldn’t be too long this time and he would be assessed for autism. How wrong I was.

We waited and waited. An assessment of need is supposed to be started within three months and completed within six months of applying.  

After two years of waiting, in 2017, I lodged a complaint about the delay to the HSE under section 14 of the Disability Act. It took 11 months to get a response to the complaint itself. While this complaint was upheld, it made no difference whatsoever. We continued to wait.

Struggling without help

As my son was getting older, things were getting more and more difficult for him. We didn’t know what to do. We were struggling.

The school helped as much as they could but without him having access to Special Need Assistant (SNA) hours there was only so much they could do.

I was told by the HSE that being assessed privately would be a waste of money as he wouldn’t be entitled to any supports and would still have to wait to be seen through the HSE.

After they told me that I felt helpless. I sat on the ground outside work and cried my eyes out. It was heartbreaking.

I thought it couldn’t get any worse, but it was then that he said he was suicidal and couldn’t cope with how he felt anymore. This was my worst nightmare but I’m glad he felt able to tell us how he was feeling. 

At that point I had enough. I couldn’t watch him 24/7. 

I contacted a solicitor and told him everything. He was horrified we had no answers six years after starting the process.

That October, we took the HSE to the High Court to get a judgement order to force them to complete his assessment.

He received the assessment four weeks later and was diagnosed with autism towards the end of 2018. It wasn’t a shock at that stage. We already knew he had autism; his teachers knew he had autism. It was finally official.

It was great for him to be able to understand what was going on. His mood changed so much after that. He felt happier and much more comfortable in himself.

‘We’ve given up on the HSE’

We were relieved that we were finally going to get the services he needed and just in time to prepare for secondary school. Unfortunately, since then we haven’t received a single service that was recommended for him, no occupational or speech and language therapy, no psychology and that was 15 months ago.

We’ve given up on the HSE. They won’t help us. We’re now paying privately for speech and language as well as occupational therapy sessions when we can afford them.

He is in first year in secondary school now. The school have been fantastic. They’ve arranged a laptop for him and an SNA who has been a great help.

He’s like a different child. He still has such a long way to go but he is so much happier now than he was. It should not have taken this long to get him to this position.

How is this delay in assessment going to affect his future? What could have been done differently so my son didn’t end up suicidal at 11 years of age?

We followed all their procedures. We waited and waited. We went through the HSE complaints and appeals process twice. We offered to pay privately. We took them to the High Court. Should we have fought harder? 

We don’t know. My own mental health has suffered badly over the years because of this. I’m exhausted and I feel like a failure as his mother. This shouldn’t happen. There are other parents out there just starting this journey and have no idea the fight they have ahead of them. Something needs to change now. 

The author wishes to remain anonymous.

If you need to speak to someone, contact: 

  • Aware 1800 80 48 48 (depression, anxiety)
  • Samaritans 116 123 or email jo@samaritans.ie
  • Pieta House 1800 247 247 or email mary@pieta.ie (suicide, self-harm)
  • Teen-Line Ireland 1800 833 634 (for ages 13 to 18)
  • Childline 1800 66 66 66 (for under 18s)

ASSESSING AUTISM Investigation

Do you want to know if a delay in getting a childhood diagnosis of autism spectrum disorder (ASD) is fuelling a private industry?

The Noteworthy team want to do an in-depth investigation into what is causing the long waiting lists and delays for public ASD assessment as well as what impact these delays are having on children and families around the country.

Here’s how to help support this proposal>

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