Cara, 12, to tell Dáil committee autism services 'are a national disgrace'

And according to her father Mark, she is planning not to hold back. 

Cara believes what is going on at the moment is a national disgrace and she plans to say that to the committee.” 

“Cara will be addressing each one of those committee members. One of the things she will be saying to them is that while they will be going home to their families, she will be going home to violence — the violence of her brother constantly hitting himself." 

Cara has two brothers with autism. Neil, aged 10, and John, aged five. Neil is severely autistic and hits himself with a clenched fist in the face on a daily basis.

Frustrated by what she sees as a lack of services, Cara sat her Junior Cert maths in the summer in a bid to help raise awareness and funding for better services locally and nationally. 

Her appearance before the committee follows a face-to-face meeting she had with Taoiseach Micheál Martin in his office in August.

“All sorts of promises to tackle the problem were made by Mr Martin when he met Cara back at the end of July," says Mark Darmody.

As far as we can see, little or nothing has changed and anecdotally, we are being told by other parents that things actually seem to be getting worse.”

There are about 18,000 children currently waiting for a first meeting with the HSE.

A damning report published by autism action group AsIAm in June last year found 80% of parents and guardians have had to wait one year or more to receive an autism diagnosis for their child.

Cara’s brother Neil can watch a 10-second clip of Peppa Pig 150 times a day, hits and bites himself daily, and can exist on very little sleep, as the Irish Examiner reported in August. 

His family is unable to understand his behaviour patterns because the psychological assessments and help he has been repeatedly promised failed to arrive.

“She, and her mother Noelle and I, all feel desperate at the lack of help we are getting to deal with a very seriously affected young child and we are in little doubt that the lack of services has greatly impacted on his condition,” Mr Darmody said.

Cara will call for, among other things, immediate financial relief for families paying privately for autism services and the introduction of new HSE oversight and accountability structures.

During her meeting with the Taoiseach, Cara pleaded with him to do something for the thousands of children in Ireland like her two brothers who can’t access basic services on a regular basis and who have been severely impacted as a result.

In the case of the Darmody boys, the resources they get from the HSE are, the family says, “patchy at best”.

For example, it took the HSE until December 2016 to diagnose Neil, who was born in October 2012, as autistic.

This was despite him being referred by a public health nurse when he was aged about 16 months to local HSE child services as a child of concern.

“Cara promised Micheál Martin she would be back if she was not convinced he is doing everything he said he would do for autism services in this country,” Mr Darmody said.

“Well, guess what? She’s coming back, and she is as determined as ever to push on with her campaign to get better autism services, not just for her brothers but for the thousands of children like them.”

A few months before her meeting with the Taoiseach, the Oireachtas heard there had been 212 legal actions taken against the HSE between 2018 and 2020 in relation to overdue assessment of needs (AONs).

This had so far cost the State €701,000 in legal costs, the Oireachtas heard

It then emerged in May that 452 of the 5,538 children whose speech and language therapy needs had yet to be assessed had been waiting more than two years for their first speech and language therapy session.

Cara's GoFundMe page to raise money for local and national autistic services can be found here