Published on 12, July, 2020
I have Asperger’s syndrome. Why do they class Asperger’s and autism as the same now when they are so different from each other? I mean Asperger’s is a genetic condition which affects the way someone thinks and makes them slightly different and socially awkward and more anxious. Autism on the other hand in the classic sense is a debilitating condition characterised by the inability to speak and vocalise words, intellectual disability and aggression with violent outbursts. Why do people with Asperger’s dominate the perception of autism. Everybody seems to forget about these kids who cannot talk at all. People view people like us people with Asperger’s as what autism is. This is not the case classic autism as it used to be defined was basically someone who regressed around the ages 2-4 into losing all speech and ability to function. It seemed to start around the 50s to 60s. Whereas Asperger’s has been around for maybe thousands of years. There is cases documented of people who may have had Asperger’s way before the 50s. A woman in Russia in the early 1900’s at the beginning of that decade worked with under a dozen kids who would have been declared as autism highly functioning or Asperger’s syndrome nowadays. These kids were quiet and inhibited but showed great ability to work machines and understand mechanisms of things and patterns. However it appears that people who have Asperger’s are born with it and always have it. They may take a while to develop language but they never develop it and lose it forever the same way someone with classic autism does. I have known people who had one child who lost the ability to speak and function about 2-4 years old and never spoke again and had to be put in a care home. But none of the boys other siblings had this happen to them. So how do you explain this sudden regression in some people that doesn’t happen with every other kid in that same family. Something must be causing a sudden regression especially if it’s only in a specific family member and no others. Asperger’s on the other hand is genetic and if one family member has it they all are almost garuanteed to have it more or less. If anyone has any thoughts on this please do share them as I would like to make more sense of this.
'Autism on the other hand in the classic sense is a debilitating condition characterised by the inability to speak and vocalise words, intellectual disability and aggression with violent outbursts.'
That's news to me. I can speak, I have three degrees, and I'm not aggressive. I'm not debilitated by having an autistic brain - I'm debilitated by a chaotic and uncaring world. Also, please can we stop referring to 'profound' or 'serious' autism? It's very unhelpful. As Martin has said: 'This approach is seen as less than useful, as people needing a great deal of support may not have their abilities recognised and people needing less support may not have their very real difficulties addressed.'
Although I respect your opinion. People with profound autism are unfortunately struggling with aggression issues as they are likely in pain due to gut issues. So they lash out and end up in care homes or mental institutions for the rest of their lives this is not acceptable. They should not be locked up and out of sight. It isn’t fair at all.
We'll agree to disagree on the use of the term 'profound autism'. I've had gut issues since my teens (I'm 42 now), which I'm certain are related to anxiety. I've never been aggressive because of gut issues. Indeed, the point is that autism is a spectrum and we all have different experiences.
‘Do you make your definition as a medical professional or layman?’
I make it as an autistic person who has been researching autism over the past two and a half years.
‘Can you also layout the definition for us to understand better please?’
I think ‘profound autism’ means autistic + high support needs – therein being the point: it’s autism *and* another condition or conditions.
Ann Memmott is an autistic autism professional. She says that difficulties such as an intellectual disability and epilepsy have been inaccurately labelled as ‘profound autism’.
https://annsautism.blogspot.com/2022/10/i-am-not-fan-of-creating-profound.html
Karen (surname unknown) was diagnosed as autistic aged 40 and she runs a wonderful YouTube channel called Proudly Autistic. In one of her videos, she comments on attitudes to autism that remind me of ‘profound autism’:
‘“You’re just a little autistic”…”You’re not really AUTISTIC autistic”…“I have some random neighbour or relative and they are autistic: they’re really autistic – they’re nothing like you.” All these attitudes are extremely offensive, and they demonstrate a general lack of understanding of what the autism spectrum actually is.’
https://www.youtube.com/watch?v=eTAgmyoTgAw
My dislike of the ‘profound autism’ term is matched by my dislike of ‘high functioning’. As someone commenting on the Proudly Autistic video I have quoted from said:
‘High functioning means you’re spending much more energy trying to pass as normal. It doesn’t mean your life is easier.’
That’s pretty profound, isn’t it?
Likewise, Erin Ekins said on Twitter/X:
‘Autistic people that society has decided are ‘high functioning’ tend to have extremely disproportionate levels of mental illness and trauma, to the point where it’s actually life limiting and life threatening.’
‘Can you also lay out the definition for us to understand better please?’
Ann Memmott is an autistic autism professional. She says that difficulties such as an intellectual disability and epilepsy have been inaccurately labelled as ‘profound autism’:
‘"You’re just a little autistic"…"You’re not really AUTISTIC autistic"…"I have some random neighbour or relative and they are autistic: they’re really autistic – they’re nothing like you." All these attitudes are extremely offensive, and they demonstrate a general lack of understanding of what the autism spectrum actually is.’
Autistic Not Alien said:I could but I won't.
Do you make your definition as a medical professional or layman?
Can you also layout the definition for us to understand better please?
Autistic Not Alien said:I see my autism as a difference rather than a disability
I believe this is correct. The Autism part has 2 aspects:
1 - a label for the area of neurodivergence that your traits fall within.
2 - as a diagnosis, autism means your neurodivergence is sufficiently impacting you that you are classed as being disabled by it.
It is a little confusing and really should be two different terms for clarity, so it may be best to say we are neurodivergent but diagnosed as autistic to show the autism is the label for disability.
Spectrum conditions are quite hard to stick labels on.
I could but I won't.
Autistic Not Alien said:We'll agree to disagree on the use of the term 'profound autism'.
You can use the definition used by medical groups if you like:
https://childmind.org/article/what-is-profound-autism/
Profound autism is defined as having an IQ of less than 50 or being nonverbal or minimally verbal.