Monday 22 October 2018

Mairin Egan

Lobbyist and founding member of the Society of Autistic Children

Mairin Egan, who died last week at the age of 87, dedicated her life to the cause of autism.

In 1922 her father, Paddy Byrne, and his wife Nora emigrated to Argentina and later Brazil, where he worked as a banker. But when Nora became pregnant with Mairin, the first of her five children, Paddy dispatched her to Ireland where he insisted all his children should be born.

Mairin was later sent back to Dublin to live with her grandparents, and educated in Sion Hill and Loreto Abbey in Rathfarnham before joining the Central Bank and then the US consular service of the American embassy. Her love of drama was evidenced by her involvement in the Brendan Smyth and then the Gaiety schools of acting.

She lived in number 19 Greygates in Mount Merrion and hadn't far to look to meet her future husband, Joe Egan -- a solicitor by profession, he made his money as a ticket agent for the Irish Hospital Sweepstake -- who lived at number 3. They married in 1951 and in 1953 to their great joy, their eldest son, Donald was born.

Their happiness turned to concern when Donald failed to start speaking like children of a similar age did and would not make eye contact. The doctors prescribed a hearing aid and glasses, which Donald threw away at every available opportunity. When Donald's behaviour became even more obsessive and solitary, Joe and Mairin were told to accept the fact that their son was 'mentally retarded'.

He was actually autistic, but that was a relatively new concept in medical terms. Mairin sought advice from others in a similar position and joined the Parents and Friends of Mentally Handicapped Children, of which the late Judge Declan Costelloe was a prominent member.

But she knew the only way to support the needs of autistic children and their families was to lobby those in power vociferously. She had a sinfully wicked way of dealing with particularly biased, arrogant and uncaring people she met. She would find out their home address, pay a subscription and enrol them in the Irish Anti Apartheid movement as a way of getting them to think about others.

She became a founding member and then secretary of the Irish Society of Autistic Children in 1963 which later became the Irish Society for Autism. She lobbied extensively to get a dedicated autistic unit for children in St Loman's Hospital and their work bore fruit in 1965 when such a unit was opened. Donald was one of the first patients, and he spent four extremely happy years there.

At the age of 16 Donald was deemed too old to stay in St Loman's and he was transferred to St Ita's in Portrane. Mairin continued to lobby and fundraise to raise awareness of autism and invited medical students from the Royal College of Surgeons to her home to study Donald on the weekends that he stayed there.

Joe and Mairin's determination to encourage research into autism led to Joe, and subsequently Mairin's, decision to leave their bodies to the Royal College of Surgeons for research purposes.

In 2002 Donald was moved to Clonmethen, then in Oldtown, Co Dublin, where as an autistic man, just short of his 50th birthday, he found peace and lives there to this day.

Mairin and Joe's younger son Paul went on to become partner in one of the biggest law firms in the country.

At Mairin's funeral, Paul eloquently detailed the tireless work that his mother had done in the cause of autism, not just for the sake of his brother Donald, but for all sufferers of this condition that still confounds medical science.

Sunday Independent

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