In this article:

  • Changing lives
  • Road to diagnosis
  • As normal as possible

Changing lives 

When Angie Green found herself in hospital after suffering a mini-stroke at 35, she knew her life had to change – and quickly.

The challenges and stress of caring for her autistic daughter Katie – who could not talk, had challenging behaviour and epilepsy – had made Angie “an emotional wreck”, ruined her marriage and now threatened her health.

But the mini-stroke acted as an epiphany for Angie and prompted her to take action to improve her – and her 9-year-old daughter’s – lot.

“I threw myself into finding support for Katie,” recalls Angie, who is now 52 years old. “I gained focus – channelling everything into something positive, including parents groups and support groups."

“You can think ‘why me? What have I done?’ but then Katie didn’t ask to be like this – you can’t sit around feeling sorry for yourself.”

Angie found support from social services, including arranging respite care, which was a “godsend”. “You need a level of care to be able to support the rest of the family,” she says. “To think you can cope on your own is ludicrous – you can’t.”

Her new-found drive extended to helping other families, including setting up a sports and leisure club for people with learning disabilities.

Angie believes the best way to cope with caring for a child with learning disabilities is to channel your energies into making the best out of the situation and fighting to get all the support possible.

“I’ve never been one to sit back and do nothing,” she says. “I want to get what’s best for Katie and if I can help others along the way, I get confidence from that and knowing that I am doing the right thing by my daughter."

“People should always fight; don’t let others put you down and follow your gut instinct. Fight for everything.”

Road to diagnosis

Angie has been fighting for Katie since she was a baby. Her first big battle was to get Katie diagnosed as autistic.

For the first year of her life Katie was like any other baby; healthy, happy, and learning new skills. By the time she was a year old she had learned a few words, such as ‘hello’ and ‘bye bye’ and was also showing signs of developing pretend play.

But by 14 months Angie suspected that Katie had a problem. The language and play Katie had been learning had suddenly vanished and she was becoming increasingly withdrawn.

At this time Angie had not even considered that it could be autism. “I remember thinking one day ‘my god, this child is deaf!’” she remembers. “I was hitting the side of a Quality Street tin at her side and there was no reaction.”

Nobody else seemed to suspect autism either. Consequently, she was referred to hospital for tests, but the waiting list was months long. All this time, Katie’s behaviour became increasingly abnormal.

“Katie became more withdrawn; she preferred to go to her cot; it was a place of safety and comfort for her. She would have screaming fits. She would play with her sibling [Laura] but there was no imaginary play – Katie used to line cars up while Laura would have them racing around a track. It was the same with pencils; she would line them up rather than draw with them.”

The next two years saw an endless series of tests to try to discover what was wrong with Katie, and it wasn’t until she was 4 years old that she was formally diagnosed with autism.

The diagnosis was traumatic for all the family. “We saw an educational psychologist at Guy’s Hospital in London,” Angie says. “That day was awful. We were put in a room and told to play with Katie, with a team watching behind the window. It felt as if we were all being diagnosed and at the end of the day they told us our daughter had autism.”

Not only that, but a primary reason for Katie’s autism was given as Angie and her former husband. “We were called ‘refrigerated parents’ – 20 years ago they looked at autism as coming from ‘cold’ parents that didn’t connect with their children and showed no love.”

The ‘refrigerated parents’ theory has since been discredited, but at the time it meant that not only did Angie have to face up to having to care for an autistic daughter, she was also burdened with the guilt that it was partly her fault.

“You think ‘did I do something wrong when I was pregnant?’ But I didn’t smoke or drink. Did I pick her up enough? I did all the mother things and always showed her love. It never goes away – you can’t help feeling guilty.”

Nevertheless, the diagnosis brought some relief to Angie because she finally knew why Katie was the way she was. But it also showed how serious the situation was. She now knew Katie was not going to get better and would need 24-hour care for the rest of her life.

It was the stress of coming to terms with this, caring for Katie, as well as bringing up her other daughter, that during the next five years caused Angie’s marriage to break down and finally resulted in her mini-stroke.

As normal as possible

Today, Angie still cares for Katie, who is now grown up, but still with a mental age of about 18 months. Nevertheless, Angie ensures that Katie lives as normal a life as possible. For example, Katie has her own space in the house – decorated to her own taste – where she can indulge her passion for jigsaw puzzles.

But while Angie makes the best of the situation, she admits that life remains tough. “I want to give Katie a good life – to live it to the full while she’s around,” she says. “We go on holidays, I treat her as normally as I can, but I pay the price. I’m permanently exhausted, I can’t do what my friends do – I can’t drop everything and go out for coffee or go to the theatre – I juggle my life around Katie, I have to live with Katie’s autism.”

It would be easy to ask Angie why she does not put Katie into a residential care home and go back to a ‘normal’ life, but she is clear about her reasons. “I could have a normal life if I wanted, but I can’t do it,” she says unequivocally. “I’d feel too guilty. I’m not ready to let go yet – I don’t know if I ever will be.”

For now, Angie is content to carry on as Katie’s carer. “People ask how I manage? I don’t push the autism aside – I embrace it because that makes Katie who she is. It’s been difficult, but you have to look at the positives.”