On The Record presenter Gavan Reilly has highlighted the many serious barriers families in Ireland face when a child gets an autism diagnosis.

Speaking to mark World Autism Awareness Day this morning, the Newstalk presenter noted that every family’s experience is different and said he wanted to speak about the Irish system in general rather than his own family’s experience.

“I am conscious upfront that I am not an autistic person talking about autism and I know sometimes people with autism find it slightly marginalising to hear themselves being talked about by people who are not members of their community,” he said.

“But I want to talk for a couple of minutes about some of the things, if you are trying to navigate a diagnosis of autism in a child in Ireland, you might want to be aware of,” he said.

Gavan went on to share a range of barriers and issues children with autism in Ireland are currently facing.

“What I would like to discuss is not my parenting story because there’s no point in prescribing my story because, again, it is different for everyone,” he said.

“I’m also mindful of the increasing number of people who are diagnosed as being autistic later in life and I don’t want to exclude them from what I’m about to say.

“Some things you might need to be aware of when it comes to getting the sorts of therapies that your child might need to better integrate their world with everyone else’s.

A bit overwhelmed at all the kind words about the piece on radio this morning about World Autism Awareness Day and what you may experience if you’re the parent of an autistic child.

You should be aware. pic.twitter.com/kSBOQPgjii

— Gavan Reilly (@gavreilly) April 2, 2023

“You should be aware that the public system is, frankly, a bit of a shambles.

“You should, firstly, be aware that for many people the path to a diagnosis of early childhood autism starts when a child is around two years old.

“You should be aware that if there is a prospect of your child perhaps having developmental differences, they will be referred to one of 91 Community Disability Network Teams (CDNT).

“You should be aware that you might only find out that your child is on the books of a CDNT when you get a letter, out of the blue, from a local charity telling you that your child is now on their books.

World Autism Awareness Day. Image: Kenneth O’Halloran

“You should be aware that in some instances, the delivery of the CDNTs has been contracted out to charities like the Daughters of Charity or the Central Remedial Clinic or Enable Ireland.

“You should be aware that this may, incorrectly, make you feel like your child is a charity case. They are not a charity case and it is worth making sure you are aware of that.

“You should be aware that, having been referred, your child is entitled by law to an assessment of need within six months – that is the first step of identifying any diagnosis and to figure out whatever therapies may be warranted.

“You should be aware, however, that the average waiting time is not the six months prescribed by law, it is 19 months and that is an average because, for many people, it is a much longer wait.

Waiting lists

“When we’re talking about waiting lists, you should also be aware that practitioners believe that interventions and therapies are at their best before a child turns six or seven when they are still at their most receptive to some new ideas, so the earlier intervention, the better for the child.

“You should also be aware that, after you eventually get an assessment, then you ought to get a service statement, within a month, that outlines’ exactly what treatments may work best for your child

“But you should be aware that, even at that point, there is no guarantee that the services will follow because around one-quarter of all the therapist positions within the CDNTs nationwide are vacant because there either aren’t enough practitioners or because the roles don’t pay highly enough.

World Autism Awareness Day. Image: Kenneth O’Halloran

“You should be aware that because the most recent public pay deals apply to the HSE but not necessarily to outside bodies, the HSE’s external contractors can’t match the pay the HSE does, so teams run by the HSE have an advantage of filling their posts while the other ones don’t.

“You should be aware that, whenever those services might get offered, they may not be delivered in the new local primary care centre that you thought was designed for that purpose because you may not be aware that primary care and community care are two parallel and different systems and you should be aware that your child’s disability supports which were redesigned to be delivered in the community may actually end up being delivered at some point in the future in an area outside of your community.

“You might not be aware of that distinction yourself when you are still nonetheless invited by primary care teams to attend online classes to effectively train you in providing your own DIY speech and language therapy and they will make an explicit threat that you could be dropped from the books if you don’t engage, even though in the end, they will drop you from the books anyway because you were already on the books of the community team so, therefore, you don’t need to be on the books of the primary team.

Private care

“So you should be aware that many if they have the means, feel they have no option but to go down the private route.

“You should be aware that even if you have the money, which is often a ‘small’ four-figure sum, that that to secure the time of a private psychologist to get a diagnosis, you will be waiting months for an appointment such is the backlog of needs.

“You should be aware that even after that, it could be months before you can get the appointments for the therapies because they are all full up too and without spinning it out, you should be aware that they are not cheap.

“You should be aware that we don’t train nearly enough practitioners and therapists because even the private providers are having difficulty finding enough qualified practitioners.

Minister of State Anne Rabbitte speaking at Government Buildings in January 2021. Picture by: Julien Behal Photography / RollingNews.ie

“You should be aware that the Cabinet minister in charge of addressing disability, who is Roderic O’Gorman, was given the word disability in his job title 33 months ago but he was only given responsibility for disability services 33 days ago.

“You should be aware that, when the junior minister for disabilities services Anne Rabbitte wanted to meet with each of the HSE teams to discuss how these delays could be addressed, she was refused a meeting – with her own HSE staff.

Early intervention

“In spite of all of this, there are some parts of the State system which are really wonderful.

“For example, there are early intervention programmes which can be either attached to primary schools or conducted in private settings or delivered through home tutoring which act as a kind of a specialised pre-school for autistic children to help set them on the path of education.

“Although there are differing opinions within education and some people would rather there be more funding for the school rather than the whole system to be so reliant on private and how tutoring.

Services

“But, of course for all the good there is a bad and you should also be aware that you already need a diagnosis of autism to be enrolled in an early intervention programme and if you wait for the public system to provide you with that diagnosis then, by the time you get it, you will be too old to attend the State’s own system to try and address that child’s needs.

“And of course, there are far more spaces in these classes than in the primary autism classes which in turn, have more space than in the secondary ones.

“So you should be aware that far too many children have to travel far, far away from home – getting buses and taxis across cities to get whatever programmes they can get.

You should be aware

“Really, what I want you to be aware of is that autistic children may not be all that different to anyone else.

“They come in their own shapes and sizes. They have their own likes and dislikes and preferences, just like anyone does.

“They are merely just different. As the Maori would say they are developing in their own time and space.

“So, on this World Autism Awareness day, you should be aware that it is not just the autism you should be aware of.

“It is also the many barriers that are put in place of the people we are trying to celebrate today.”

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