Behaviour modification for autistic adults - what the heck?

[LissyP]

Like many of you, I recently received an email from NDSA asking, 'What do you think of Behavioural Analysts from PBS running post-diagnostic training and support for late diagnosed autistic adults? PBS stands for Positive Behaviour Support and has evolved from ABA.'

I cannot express how angry and upset I am about this. ABA has no positive benefits for autistics. It causes trauma, and the only people who benefit are those raking in the money from providing it.

It took me several years and lot of determination to get my autism diagnosis - I had to keep chasing up broken promises and ask for a second opinion. The psychiatrist who granted the diagnosis said I'd be given 'post-diagnosis counselling' within 6 weeks. 6 *months* later a nurse rocks up to my home, makes a patronising comment about the fact I've got a lot of books, pisses me off greatly, then hands me some documents which could have been emailed as soon as diagnosis was agreed.
I thought that was bad, and a waste of my National Insurance, but the idea that newly diagnosed adults, who are still coming to terms with the idea that so many of their struggles are down to an actual disability rather than being 'messed up', ''flaky' or 'lazy', should then be left at the mercy of people who think autism is a set of behaviours to be dog-trained out of people, is absolutely horrendous. The only thing worse I can imagine is an exorcism similar to the one inflicted on Jeanette Winterson when her lesbianism was discovered.

The best people to support and guide neuro-divergents are NDs ourselves. I've no idea who came up with this appalling ides of ABA, but I bet they stand to make a fortune from it.

Does anybody think it's a good diea?

 

[jules]

Nope. I agree with you 100% - the only thing worse than the tumbleweed of zero support after late diagnosis would be ABA/PBS.

 

[Inger Richardson]

Like many of you, I recently received an email from NDSA asking, 'What do you think of Behavioural Analysts from PBS running post-diagnostic training and support for late diagnosed autistic adults? PBS stands for Positive Behaviour Support and has evolved from ABA.'

I cannot express how angry and upset I am about this. ABA has no positive benefits for autistics. It causes trauma, and the only people who benefit are those raking in the money from providing it.

It took me several years and lot of determination to get my autism diagnosis - I had to keep chasing up broken promises and ask for a second opinion. The psychiatrist who granted the diagnosis said I'd be given 'post-diagnosis counselling' within 6 weeks. 6 *months* later a nurse rocks up to my home, makes a patronising comment about the fact I've got a lot of books, pisses me off greatly, then hands me some documents which could have been emailed as soon as diagnosis was agreed.
I thought that was bad, and a waste of my National Insurance, but the idea that newly diagnosed adults, who are still coming to terms with the idea that so many of their struggles are down to an actual disability rather than being 'messed up', ''flaky' or 'lazy', should then be left at the mercy of people who think autism is a set of behaviours to be dog-trained out of people, is absolutely horrendous. The only thing worse I can imagine is an exorcism similar to the one inflicted on Jeanette Winterson when her lesbianism was discovered.

The best people to support and guide neuro-divergent are NDs ourselves. I've no idea who came up with this appalling idea of ABA, but I bet they stand to make a fortune from it.

Does anybody think it's a good idea?

Nope - and there doesn't appear to be a way for people to feed in and have concerns/facts and research to be taken seriously ( unless you ask questions in advance go the relevant meeting ( health and well-being but I'd argue this also fits under Safeguarding / Community safety in general. Compliance training is very dangerous for already vulnerable neurodivergent. Being able to set boundaries meaningful impact on improved outcomes.

"Evidence-based" is a loose term for some. Autistic led participatory research producing results that make sense seems to take ages to surface in mainstream - its all about ego/business/£ How would they feed their piggy bank if not fixing broken Neurodivergent.

The problem I have with it is that there are plenty of amazing Autistic researchers and allies doing the work to explain what it is to be Autistic and the min take away is that we don't know what it is to be autistic and not traumatised. We are monotropic thinkers - not rigid - we communicate differently ( directly and authentically) - honestly some days - think it makes to keep people who think differently in the minority. What annoys be the most is that clearly superior transformative autistic led research doesn't filter very quickly or meaning fully into Large Autistic Charities ; Training providers ...its a big deal- think the better peer group support get - the louder the message. I collected some relevant bits and bobs including research on these PBS business's- Bucks has so much to learn- its. full time job. I filled a couple of Padlets with a mixture of research; you tubes. If you haven't come across her already Dr Monique Botha always makes me feel empowered/validates - she tends to focus on the impact of what she terms Minority Stress and the Neuro-normative Ableist NT research that has a very different agenda to Autistic led participatory research....https://youtu.be/Zu7m-OwjquY

PSED; Ableism; PBS;Ethics; Evidence Base Neurodiversity Affirming and Trauma informed
https://padlet.com/NDAffirmBucks/itmmjjf4bpah6ah9

https://padlet.com/NDAffirmBucks/nirvivgdbfhm6g1i
Neuroaffirming Bucks - Concerns in relation to the STEP u/on- PBS programme

 

[Inger Richardson]

Nope - and there isn't a away you be taken seriously - despite there being a legal obligation to consult with the community any service they provide serves..
"Evidence based" is a loose term for some. Autistic led participatory research producing results that make sense seems to take ages to surface in mainstream - its all about ego/business/£ How would they feed their piggy bank if not fixing broken Neurodivergent.

The problem I have with it is that there are plenty of amazing Autistic researchers and allies doing the work to explain what it is to be Autistic and the min take away is that we don't know what it is to be autistic and not traumatised. We are monotropic thinkers - not rigid - we communicate differently ( directly and authentically) - honestly some days - think it makes to keep people who think differently in the minority. What annoys be the most is that clearly superior transformative autistic led research doesn't filter very quickly or meaning fully into Large Autistic Charities ; Training providers ...its a big deal- think the better peer group support get - the louder the message. I collected some relevant bits and bobs including research on these PBS business's- Bucks has so much to learn- its. full time job. I filled a couple of Padlets with a mixture of research; you tubes. If you haven't come across her already Dr Monique Botha always makes me feel empowered/validates - she tends to focus on the impact of what she terms Minority Stress and the Neuro-normative Ableist NT research that has a very different agenda to Autistic led participatory research....https://youtu.be/Zu7m-OwjquY

PSED; Ableism; PBS;Ethics; Evidence Base Neurodiversity Affirming and Trauma informed
https://padlet.com/NDAffirmBucks/itmmjjf4bpah6ah9

https://padlet.com/NDAffirmBucks/nirvivgdbfhm6g1i
Neuroaffirming Bucks - Concerns in relation to the STEP u/on- PBS programme

 

[Peaby]

Like many of you, I recently received an email from NDSA asking, 'What do you think of Behavioural Analysts from PBS running post-diagnostic training and support for late diagnosed autistic adults? PBS stands for Positive Behaviour Support and has evolved from ABA.'

I cannot express how angry and upset I am about this. ABA has no positive benefits for autistics. It causes trauma, and the only people who benefit are those raking in the money from providing it.

It took me several years and lot of determination to get my autism diagnosis - I had to keep chasing up broken promises and ask for a second opinion. The psychiatrist who granted the diagnosis said I'd be given 'post-diagnosis counselling' within 6 weeks. 6 *months* later a nurse rocks up to my home, makes a patronising comment about the fact I've got a lot of books, pisses me off greatly, then hands me some documents which could have been emailed as soon as diagnosis was agreed.
I thought that was bad, and a waste of my National Insurance, but the idea that newly diagnosed adults, who are still coming to terms with the idea that so many of their struggles are down to an actual disability rather than being 'messed up', ''flaky' or 'lazy', should then be left at the mercy of people who think autism is a set of behaviours to be dog-trained out of people, is absolutely horrendous. The only thing worse I can imagine is an exorcism similar to the one inflicted on Jeanette Winterson when her lesbianism was discovered.

The best people to support and guide neuro-divergents are NDs ourselves. I've no idea who came up with this appalling ides of ABA, but I bet they stand to make a fortune from it.

Does anybody think it's a good diea?

 

[Peaby]

Like many of you, I recently received an email from NDSA asking, 'What do you think of Behavioural Analysts from PBS running post-diagnostic training and support for late diagnosed autistic adults? PBS stands for Positive Behaviour Support and has evolved from ABA.'

I cannot express how angry and upset I am about this. ABA has no positive benefits for autistics. It causes trauma, and the only people who benefit are those raking in the money from providing it.

It took me several years and lot of determination to get my autism diagnosis - I had to keep chasing up broken promises and ask for a second opinion. The psychiatrist who granted the diagnosis said I'd be given 'post-diagnosis counselling' within 6 weeks. 6 *months* later a nurse rocks up to my home, makes a patronising comment about the fact I've got a lot of books, pisses me off greatly, then hands me some documents which could have been emailed as soon as diagnosis was agreed.
I thought that was bad, and a waste of my National Insurance, but the idea that newly diagnosed adults, who are still coming to terms with the idea that so many of their struggles are down to an actual disability rather than being 'messed up', ''flaky' or 'lazy', should then be left at the mercy of people who think autism is a set of behaviours to be dog-trained out of people, is absolutely horrendous. The only thing worse I can imagine is an exorcism similar to the one inflicted on Jeanette Winterson when her lesbianism was discovered.

The best people to support and guide neuro-divergents are NDs ourselves. I've no idea who came up with this appalling ides of ABA, but I bet they stand to make a fortune from it.

Does anybody think it's a good diea?

My normally intelligent stepdaughter texted me today to ask whether Lizz Truss may be autistic. I replied, ’And what if she is?’ To which she replied, ‘It may explain her behaviour.’
Although I can accept that I/we do appear to behave differently, sometimes making fundamental errors, I wish we could escape the unproductive habit of reducing people, all people, to a set of observable behaviours.
On your other point regarding post-diagnostic support, there is a very strong and clear need to invest in services that are peer-led that ease newly diagnosed individuals in to a life in which they can begin to understand their strengths and weaknesses.
Recently, a local branch of a national organisation won £100,000 to support adults with autism. However, their approach is to put the money into offering guidance and support to get a diagnosis, with post-diagnosis support in the form of volunteer befrienders . The waiting list locally for diagnosis is around two years long. £100,000 could pay for a couple of diagnosticians, or be split into diagnosticians and paid mentors/peer support workers. But that would be too easier a solution. SMH

 

[kazzaroo]

Like many of you, I recently received an email from NDSA asking, 'What do you think of Behavioural Analysts from PBS running post-diagnostic training and support for late diagnosed autistic adults? PBS stands for Positive Behaviour Support and has evolved from ABA.'

I cannot express how angry and upset I am about this. ABA has no positive benefits for autistics. It causes trauma, and the only people who benefit are those raking in the money from providing it.

It took me several years and lot of determination to get my autism diagnosis - I had to keep chasing up broken promises and ask for a second opinion. The psychiatrist who granted the diagnosis said I'd be given 'post-diagnosis counselling' within 6 weeks. 6 *months* later a nurse rocks up to my home, makes a patronising comment about the fact I've got a lot of books, pisses me off greatly, then hands me some documents which could have been emailed as soon as diagnosis was agreed.
I thought that was bad, and a waste of my National Insurance, but the idea that newly diagnosed adults, who are still coming to terms with the idea that so many of their struggles are down to an actual disability rather than being 'messed up', ''flaky' or 'lazy', should then be left at the mercy of people who think autism is a set of behaviours to be dog-trained out of people, is absolutely horrendous. The only thing worse I can imagine is an exorcism similar to the one inflicted on Jeanette Winterson when her lesbianism was discovered.

The best people to support and guide neuro-divergents are NDs ourselves. I've no idea who came up with this appalling ides of ABA, but I bet they stand to make a fortune from it.

Does anybody think it's a good diea?

No terrible idea...we're not lab rats....