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VOICES
The long wait for autism assessment 'From cautiously optimistic to desperately worried'
‘Starting primary school was always going to be difficult but now I am concerned that it will be deeply traumatic and damaging.’
WE’VE BEEN WAITING for over a year for my five-year-old son’s assessment of need with the HSE, with no sign of an appointment yet.
He has had significant speech delay, it’s a struggle to understand him and he gets frustrated easily.
Based on our own research, we think he has sensory processing disorder, an attention deficit disorder and is probably on the autism spectrum, but he hasn’t been seen by anyone qualified yet.
In January, after five months on the waiting list, I was told by our local disability officer that it would be a few more months to get the initial appointment.
They recommended I lodge a complaint with the HSE about missing the three month deadline as they are badly under-resourced and there’s no way for them to meet the three month commitment.
They added that the more complaints that are lodged, the more of a case they can build with the HSE to get more resources.
So I did, and of course it did nothing. I got a boilerplate letter in the post. Then the pandemic hit and they kindly let us know that everything was now on hold indefinitely.
- Read more here on how you can support a major Noteworthy project on the delays and waiting lists for public autism spectrum disorder assessment.
‘Lost so so much’
The average waiting time is 19 months, in spite of legal requirements stating that the HSE should commence an assessment within three months and complete it within six months.
We’re still waiting. My son has missed out on six months of socialisation and development since March. He also missed out on all the prep for big school which they had planned in the last few months of playschool.
He’s my happy, loving, sensitive, bright and clever little boy but he has difficulties which have seriously impacted him, even in the warm, sheltered and very relaxed environment of an excellent playschool with very low student-teacher ratio.
In February, we were cautiously optimistic about him starting primary school. After 18 months of one-to-one dedicated teacher attention provided by the Access and Inclusion Model (AIM) in playschool, he had finally started to engage in group activities and make friends. That’s all gone now. He’s lost so so much.
And there’s nothing to replace it. There’s not a hope of him getting a special needs assistant (SNA) in primary school.
He doesn’t have a diagnosis so he’s going from a long-distant playschool environment where the child-teacher ratios were three-to-one, with a dedicated teacher who spent 80% of her time with just my son, to a primary school environment.
The teacher ratio, in a good year, will be 30-to-one as opposed to three-to-one. Not only that but in a rushed and underprepared pandemic setup that no one really understands.
Starting primary school was always going to be difficult but now I am concerned that it won’t just be difficult, it will be deeply traumatic and damaging. I just don’t know how he’s going to cope.
My child is (probably) autistic with ADHD and can’t talk clearly. How the hell is this supposed to work?
‘Nothing happened and nothing changed’
In May, I contacted some of my local TDs in Wicklow about the impact of lockdown on children with special needs. Jennifer Whitmore of the Social Democrats raised it in the Dáil. Minister for Children Katherine Zappone, before she left office, said someone would look into it. Nothing happened and nothing changed.
Health Minister at the time, Simon Harris, said Minister Zappone would look into it and offered to check up on the status of our assessment of need application and complaint. Following this, I got another boilerplate response from the HSE.
We’ve gone from being cautiously optimistic in February to being desperately worried. The HSE children’s disability services are a complete joke.
I haven’t looked into private options. My understanding is if you get a private diagnosis it isn’t recognised by the HSE so you wouldn’t get access to any of their services or school supports.
While we could probably afford the private assessment, there’s no way we can afford paying for long term treatment or resources.
When this issue was raised in the Dáil last month, Tánaiste Leo Varadkar said that “children are waiting for too long to get an assessment” and that this “puts a lot of stress on them and on their parents and families”.
Words are not enough. My child is one of over 5,000 waiting more than six months for an assessment, with it now indefinitely on hold. This is disgraceful. It is time for the Government to properly resource the disability service in order to help our children to thrive rather than deteriorate while waiting.
The author wishes to remain anonymous.
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ASSESSING AUTISM Investigation
Do you want to know why the wait time for ASD assessments is more than a year than legally required?
The Noteworthy team want to do an in-depth investigation into what is causing the long waiting lists and delays for assessments as well as what impact these delays are having on children and families around the country.
Here’s how to help support this proposal>
