Can you help with advice for young people with Autism?

Hello,
My name is Jessie and I'm a speech and language therapist at a NHS mental health hospital in London. I work with young people and adults who have autism.
I am compiling a collection of advice that might be useful for young people to make sense of, or better understand their experiences. I also aim to dispel some of the common myths around autism, for example that people with autism lack empathy.

I want to ask if there is any advice that you wish you had been told as a child growing up, as a young adult or even now, or any experiences that you would like to share.

Please see below some of the questions from the young people I work with.

If you would like further information please feel free to contact me at: jessica.lee36@nhs.net

Many thanks,
Jessie

- Do you tell people / boss' that you have autism? How do you say it?
- Have you had any experiences with the emergency services? How was your experience and did you tell them that you have autism?
- Do you use public transport?
- Do you get annoyed when people say "I'm a bit autistic" or "everyone is on the spectrum" etc.
- Do you have repetitive thoughts and how do you deal with them?
- Do you have friends? Do you want friends?
Parents
  • - Do you tell people / boss' that you have autism? How do you say it?

    Actually when I was first diagnosed I told my boss I was going for diagnosis. Generally I slip it into conversation casually ... after I've been hired usually.

    - Have you had any experiences with the emergency services? How was your experience and did you tell them that you have autism?

    I've some non life threatening health issues. Vision issues mostly. GPs mostly treat me like a hypochondriac. Giving blood is the worse. I fainted. They missed my vein but kept going. They've sent me to hospital to have blood taken ever since. The only time I've ever got them to take me seriously was the lumps on my balls. Benign as it happened but they got the tests done rapidly and took it seriously.

    The police on the other hand, thankfully not had to deal with them too much. I got pulled over once because a police car saw me make a u turn in an odd place. I explained to him I was lost and he gave me directions. I once got pulled over by a couple of shirty police men who seemed to think I was on drugs (in fairness I was tired). They wanted to search my car. I gestured to my very messy car and told them to go ahead. All they were going to find was empty takeaway packets. I've been a witness to a crime at least 3 times. 1 time I was threatened with a gun, one time I was mugged in a park in broad daylight and one time I was present when a pensioner was mugged. The 1st 2 times the police were very good. When the pensioner was mugged they were rather dismissive. Said they didn't need my statement. The defence lawyer actually found me through a PI to get my statement so evidently they did need my statement.

    I've been in A&E a couple of times. Again treated a bit like a hypochondriac. I've never felt the need to disclose my diagnosis but in fairness the formal diagnosis is relatively recent. On the other hand I've accompanied a friend into A&E lots of times. In ambulances even. She's autistic and always discloses. The've generally been quite good with her.

    - Do you use public transport?

    I drive. I use public transport only as a last resort. Not because it scares me but it's slow, inconvenient and I often want to travel in the late evening.

    - Do you get annoyed when people say "I'm a bit autistic" or "everyone is on the spectrum" etc.

    Not really. I've come to expect ignorance from 99% of the human race.

    - Do you have repetitive thoughts and how do you deal with them?

    By acting on them in a positive way whenever posable. Better to light a candle than curse the dark.

    - Do you have friends? Do you want friends?

    I used to have an active social life through student societies. That time ended when I was kicked out of said societies. Since then most of my friends have 'grown up,' got busy with work and serious relationships, too busy to make time for me. They've drifted away. My social life is on life support and I long for the good old days.

Reply
  • - Do you tell people / boss' that you have autism? How do you say it?

    Actually when I was first diagnosed I told my boss I was going for diagnosis. Generally I slip it into conversation casually ... after I've been hired usually.

    - Have you had any experiences with the emergency services? How was your experience and did you tell them that you have autism?

    I've some non life threatening health issues. Vision issues mostly. GPs mostly treat me like a hypochondriac. Giving blood is the worse. I fainted. They missed my vein but kept going. They've sent me to hospital to have blood taken ever since. The only time I've ever got them to take me seriously was the lumps on my balls. Benign as it happened but they got the tests done rapidly and took it seriously.

    The police on the other hand, thankfully not had to deal with them too much. I got pulled over once because a police car saw me make a u turn in an odd place. I explained to him I was lost and he gave me directions. I once got pulled over by a couple of shirty police men who seemed to think I was on drugs (in fairness I was tired). They wanted to search my car. I gestured to my very messy car and told them to go ahead. All they were going to find was empty takeaway packets. I've been a witness to a crime at least 3 times. 1 time I was threatened with a gun, one time I was mugged in a park in broad daylight and one time I was present when a pensioner was mugged. The 1st 2 times the police were very good. When the pensioner was mugged they were rather dismissive. Said they didn't need my statement. The defence lawyer actually found me through a PI to get my statement so evidently they did need my statement.

    I've been in A&E a couple of times. Again treated a bit like a hypochondriac. I've never felt the need to disclose my diagnosis but in fairness the formal diagnosis is relatively recent. On the other hand I've accompanied a friend into A&E lots of times. In ambulances even. She's autistic and always discloses. The've generally been quite good with her.

    - Do you use public transport?

    I drive. I use public transport only as a last resort. Not because it scares me but it's slow, inconvenient and I often want to travel in the late evening.

    - Do you get annoyed when people say "I'm a bit autistic" or "everyone is on the spectrum" etc.

    Not really. I've come to expect ignorance from 99% of the human race.

    - Do you have repetitive thoughts and how do you deal with them?

    By acting on them in a positive way whenever posable. Better to light a candle than curse the dark.

    - Do you have friends? Do you want friends?

    I used to have an active social life through student societies. That time ended when I was kicked out of said societies. Since then most of my friends have 'grown up,' got busy with work and serious relationships, too busy to make time for me. They've drifted away. My social life is on life support and I long for the good old days.

Children
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