Autism: it's not about fixing, it's about accepting

Altogether Autism network hui held in Gisborne.

Altogether Autism network hui held in Gisborne.

Autism advocates say the solution to helping autistic people lead fulfilling lives is simple — more understanding and less judgement by others. World Autism Awareness Day is on April 2, which also marks the start of World Autism Awareness Month. Picture by Eenevski
Paula Jessop (left), an autism advocate who has Asperger Syndrome — a form of autism — was the guest speaker at the Altogether Autism network meeting held in Gisborne. Her talk focused on acceptance of others which Altogether Autism’s national manager Catherine Trezona says is key to helping autistic people live the best life that they can. Picture by Shaan Te Kani

An alarming rate of autistic people in New Zealand have suicidal thoughts and mental health problems, not because of their autism traits but the way they are treated by others.

That was the message from autism advocate Paula Jessop, who spoke at an Altogether Autism network meeting in Gisborne.

Altogether Autism - a national autism advocacy service

The hui, hosted by national autism advocacy service Altogether Autism, provided information and insight for families of autistic children and adults, as well as local health, education and community providers.

Paula, who has Asperger syndrome (a form of autism), is an Altogether Autism advocate and a peer support person for other autistic adults and teenagers.

Through her research and, most importantly experience, she has found that there is a high number of autistic people suffering from mental health problems because they are poorly treated by others.

“Around 70 percent of autistic people experience mental health problems and two-thirds experience suicidal thoughts,” said Paula.

She has spent many years speaking with other autistic adults about their experiences of growing up with autism.

“When speaking with them we kept coming back to the same issues — bullying and judgement because they were different.

“Many of us are in therapy — I’m in therapy —and it’s because of how we’re treated. People laugh at us frequently. How we are treated in the world hurts more than our autistic traits.

“While I was growing up I was told I was bad, naughty, lazy, stupid, dumb, slow, weird, strange and odd.

“I was bullied all the way throughout school and not just by the other kids; by the teachers too. My school reports would say that I needed tough love.

“When I was at intermediate I was suffering from depression, and I was 14 when I made my first suicide attempt.

“I was stealing alcohol and at the age of 15 I started smoking cannabis just to try to escape from everything. Life became incredibly difficult. There was no escape.”

'My story - Our story'

Paula shared a story of her youth to enlighten people about growing up with autism.

“I like to call it ‘My story – Our story’ because my own story is not the slightest bit unusual from other autistic people.

“As a child I didn’t understand people. I couldn’t read non-verbal clues so I didn’t know how to make friends.

“I couldn’t comprehend verbal language. I couldn’t hear the difference in tones of voice. I couldn’t hear irritation.”

Because of sensory issues relating to the five senses — sound, sight, touch, taste and smell — there are certain sounds that are harsh on Paula’s heightened sense of hearing.

“Don’t sit next to me with a bag of chips rustling. It’s very difficult for me. I can also pick up on the hum from computers or electrical items.

“I find fluorescent lights very difficult and when I was younger I was always bothered by the tags on my clothing.

“Balance was also a problem. My spatial perception was off and I would often bump into doorways.

“I had sleep problems, anxiety and trouble learning.”

Paula has developed strategies to help her get by

Her autism hasn’t gone away. It never will, something Paula is proud of and wouldn’t change.

In order for her to cope with things that affect her sensory issues and other traits, she has developed strategies and techniques to help her get by.

“For example, I have trouble remembering verbal instructions so I carry books and pens and a visual planner around with me wherever I go.”

'Change in people's attitudes needed'

Paula said there was an expectation that autistic people must fit into the world but what was needed was a change in the way society treated people with autism and disabilities.

“My solutions are very simple ones. There needs to be more understanding. We don’t need to keep changing the autistic person. We need to change what’s around them, people’s attitudes.

“Medication isn’t for autism. It’s for how you feel. You’re medicating their stress because of the environment they’re in.

“My advice for working with anyone who has mental health problems is to firstly validate their pain. Let them know that it’s not unreasonable of them to say how they are feeling because of how they are treated.

“We can also help our autistic children by connecting them with other autistic children to show them there are other kids like them, so they feel that sense of belonging and they are not alone. Inclusive learning in mainstream schools shouldn’t mean that the child has to change. The other children around them need to learn how to be accepting.

“We also need to help autistic children understand their differences in a positive way. Talk to them about how great it is to be unique. Mention famous autistic people to them. Find any small way of making a positive change for our young people to help them have a better life.

“It’s not about fixing the autism; it’s about being more accepting of all people.

“But there is hope in this next generation. They are very accepting in a lot of ways.”

An alarming rate of autistic people in New Zealand have suicidal thoughts and mental health problems, not because of their autism traits but the way they are treated by others.

That was the message from autism advocate Paula Jessop, who spoke at an Altogether Autism network meeting in Gisborne.

Altogether Autism - a national autism advocacy service

The hui, hosted by national autism advocacy service Altogether Autism, provided information and insight for families of autistic children and adults, as well as local health, education and community providers.

Paula, who has Asperger syndrome (a form of autism), is an Altogether Autism advocate and a peer support person for other autistic adults and teenagers.

Through her research and, most importantly experience, she has found that there is a high number of autistic people suffering from mental health problems because they are poorly treated by others.

“Around 70 percent of autistic people experience mental health problems and two-thirds experience suicidal thoughts,” said Paula.

She has spent many years speaking with other autistic adults about their experiences of growing up with autism.

“When speaking with them we kept coming back to the same issues — bullying and judgement because they were different.

“Many of us are in therapy — I’m in therapy —and it’s because of how we’re treated. People laugh at us frequently. How we are treated in the world hurts more than our autistic traits.

“While I was growing up I was told I was bad, naughty, lazy, stupid, dumb, slow, weird, strange and odd.

“I was bullied all the way throughout school and not just by the other kids; by the teachers too. My school reports would say that I needed tough love.

“When I was at intermediate I was suffering from depression, and I was 14 when I made my first suicide attempt.

“I was stealing alcohol and at the age of 15 I started smoking cannabis just to try to escape from everything. Life became incredibly difficult. There was no escape.”

'My story - Our story'

Paula shared a story of her youth to enlighten people about growing up with autism.

“I like to call it ‘My story – Our story’ because my own story is not the slightest bit unusual from other autistic people.

“As a child I didn’t understand people. I couldn’t read non-verbal clues so I didn’t know how to make friends.

“I couldn’t comprehend verbal language. I couldn’t hear the difference in tones of voice. I couldn’t hear irritation.”

Because of sensory issues relating to the five senses — sound, sight, touch, taste and smell — there are certain sounds that are harsh on Paula’s heightened sense of hearing.

“Don’t sit next to me with a bag of chips rustling. It’s very difficult for me. I can also pick up on the hum from computers or electrical items.

“I find fluorescent lights very difficult and when I was younger I was always bothered by the tags on my clothing.

“Balance was also a problem. My spatial perception was off and I would often bump into doorways.

“I had sleep problems, anxiety and trouble learning.”

Paula has developed strategies to help her get by

Her autism hasn’t gone away. It never will, something Paula is proud of and wouldn’t change.

In order for her to cope with things that affect her sensory issues and other traits, she has developed strategies and techniques to help her get by.

“For example, I have trouble remembering verbal instructions so I carry books and pens and a visual planner around with me wherever I go.”

'Change in people's attitudes needed'

Paula said there was an expectation that autistic people must fit into the world but what was needed was a change in the way society treated people with autism and disabilities.

“My solutions are very simple ones. There needs to be more understanding. We don’t need to keep changing the autistic person. We need to change what’s around them, people’s attitudes.

“Medication isn’t for autism. It’s for how you feel. You’re medicating their stress because of the environment they’re in.

“My advice for working with anyone who has mental health problems is to firstly validate their pain. Let them know that it’s not unreasonable of them to say how they are feeling because of how they are treated.

“We can also help our autistic children by connecting them with other autistic children to show them there are other kids like them, so they feel that sense of belonging and they are not alone. Inclusive learning in mainstream schools shouldn’t mean that the child has to change. The other children around them need to learn how to be accepting.

“We also need to help autistic children understand their differences in a positive way. Talk to them about how great it is to be unique. Mention famous autistic people to them. Find any small way of making a positive change for our young people to help them have a better life.

“It’s not about fixing the autism; it’s about being more accepting of all people.

“But there is hope in this next generation. They are very accepting in a lot of ways.”

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