My daughter Angela was 41 when she was diagnosed as autistic. That was four years ago. Angela felt relief but also bitterness at what her life could have been like if she had been diagnosed as a child.

Although I had spoken about Angela’s unusual behaviour when she was as young as three to my GP, he came up with different reasons. At 17, she had what I can only describe as a breakdown and she spent the next three years at home avoiding friends and family. 

When Angela became involved with mental health services she was diagnosed by a psychiatrist as having clinical depression. I asked if a child as young as three could have had clinical depression and was told that was stupid. When she was older, I paid privately for a second opinion and that psychiatrist said she was suffering from anxiety.

Angela was let down by all the services that should have been able to recognise that she may have been autistic. Instead the GP, mental health services, education and even psychiatrists and psychologists failed to do this.

When Angela was diagnosed - and it took over 18 months - the autism team discharged her and as an adult she was left to get on with her life. 

Angela has to have a structure or a plan to get through the day and if things don’t go to plan that is a problem that she has to deal with. The overthinking of everything can be extremely draining. People do not always understand that autistic people have their own way of doing things and need plenty of notice before any arrangements are made. Angela also needs time to herself to get away from the world.

Following Angela's diagnosis, she thought that housing providers might take her autism and her sensitivity to noise into consideration and could support her in finding her forever home. How wrong she was as she was only offered a one-bedroom flat in an area decided by them.

She did explain that I stayed over to support her with her independence but that was not taken into consideration. Angela has had to rent privately which is much more expensive; however, she is very happy, especially in her garden. Her passion is all animals and she enjoys feeding the birds as it is very relaxing for her.

It is so important that children are diagnosed at an early age so that they and their parents can get the support that they need so eventually can transition into adulthood and lead an independent life.

As Angela’s mother I know I won't be around forever and for many parents of autistic adults, this is their worst fear. 

Thankfully, when a child is diagnosed, they are accepted by family, friends and other people. However, when an adult is diagnosed, people think autism is something they can grow out of. People’s patience, tolerance and understanding is not the same for adults and they will never know what difficulties that adult has faced because their autism wasn't recognised. 

All autistic children and adults need to be accepted by society and much more needs to be done. I am grateful to NEAS to be able to tell Angela’s story.

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