Autism Parents VS Autistic Adults - The Great Divide

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Why is there such a large divide between the Autism Parent and Autistic Adult communities? What can we do to bridge this gap between communities?
With my experience in all the Autism community bubbles online, it's clear there are many sources of tension, and differences in ideologies, language, and focus when it comes to Autism advocacy.
How can each side empathise and reach a middle ground with the other, in the interest of unity between two groups who truly both want the best outcomes for autistic children and adults?
Join Thomas Henley for a breakdown of the controversial issues and perspectives between Autistic adults and Autism parents!
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Chapters:
00:00 Introduction
00:56 Why I Need To Talk About This
02:38 Why We NEED Unity
04:48 Functioning Labels
12:06 The Fear Of Eugenics
22:11 Teaching/Parenting Methods
25:02 Changing Our Methods
28:25 Neurodiversity VS Demonising
32:54 Glamorising Disability
35:09 "You Can't Speak For Autistic Children"
37:13 Do I Hate Autism Parents?
40:15 How Can We Bridge The Divide?
43:21 Final Thoughts
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Опубликовано:

24 июл 2024

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Комментарии : 42

@maryw3643 7 месяцев назад

I feel like my autism both enables me and disables me. It depends on the task.

@turtleanton6539 7 месяцев назад

Yes that is very true

@MrDaydreamer1584 7 месяцев назад

Autism is a type of tunnel vision. The tunnel vision is disabling because it messes up things like executive functioning and social understanding. But the tunnel vision is enabling because it enhances concentration.

@Catlily5 7 месяцев назад

@@MrDaydreamer1584That is one theory of autism.

@Diverse_Interests 7 месяцев назад

ASD excels in areas that neurotypicals struggle with. It is important to let the strength and weaknesses of neurotypicals be brought to light as well when comparing people. It is completely unfair to compare with assumption of perfection on one side when there is no such thing. No one should be deciding whose life is more valid than another and who should exist. That’s immensely unethical.

@gbail9566 7 месяцев назад

I believe we all have some kind of neurodivergencies that just not to fit a special niche.

@meryluk 7 месяцев назад

Absolutely agree with you regarding eugenics. A number of our family have epilepsy at different levels. We are waiting for 2 grandchildren to be tested for autisum and as you have said there is a 2 year wait. We wouldn't change them for the world. We support and learn as much as we can to understand there needs and help where even we can.

@mumsywiggly 7 месяцев назад

Hi Thomas. I am a Autistic/ADHD parent to my boy who is also double diagnosed. I have spent 8 years in the education system in the UK SEN local authority system. Trying to secure for 8 years a education for a child who has severe social challenges (like myself) but is absolutely academically able. The struggle is real and raw and brutal. I have been invalidated, dismissed, ridiculed and outright treated like Im dumb. I have had " professionals" tell me that they are more qualified than me and remove crucial support because I suggested it. I cannot tell you how much diverse parents especially of diverse children who parent them need a voice. I would love a conversation with someone..anyone about this absolute necessity that is needed around the the diverse adult/child gap. I also think that those parents you talk about that are " warrior parents" for autistic children would really benefit ftom input from parents like me. It would help them actually understand why Autistic adults can and so passionately do relate and want to advocate for diverse children. I literally see no differences between myself and my children. Yes we have different challenges but fundermentally and literally. I am still as I was as a child. I just know myself better and can support my needs better. This is crucial because our diverse children need not to be taught but to understand what being diverse autistic/ADHD means to them in their life going forward.

@barbarasunday3514 Месяц назад

My daughter and I had more of a divide pre diagnosis. Due to her masking and my misunderstanding of asd ( i had worked with nonverbal kids in a camp setting and my girl was a making Aspie) we really didn't understand what was going on til she was 21 Even professional people miss diagnosed it in her school years Diagnosis became the bridge that brought us closer together . She talks to me more and I learn from her. She has challenges but she also has some very special gifts.

@sheila3348 7 месяцев назад

Such a good video. I’ve been thinking a lot lately about finding a way to bridge the gap between autistic people and autism parents. I joined a FB group for a fairly new special needs ministry, and most of the other members are autism parents. Many are trying to figure out what to do for their child, and many parents chime in with the usual stuff, and I try to bring an autistic perspective and give them some hope. Sometimes it gets on my nerves because I feel like I’m just repeating a lot of “Do you know why they did it, though? Let’s do some detective work.” but I gotta remind myself that it’s not their fault for following the ABA protocols. What I’m really seeing is that the enemy isn’t the parents, but the misinformation. Parents are really scared and confused, and just as we hope someone recognizes our pain as a community and engaged with us in sort of a trauma-informed way, I feel like the parents need that too. Some of them were just really young adults who are afraid that their kid can never be happy or welcome in this world. That is a traumatic idea for any good parent. This was such a good video, and I’m glad that there are more conversations about this.

@hopeconner-garcia3859 7 месяцев назад

I live in Alaska. We are a bit behind the curve on health issues. I am 48 and my only daughter is 17. Due to her high functioning and academic achievements we (the doctors and I) missed her condition til now. I also believe I am autistic but didn’t know. Your videos help me understand more about our late diagnosis. Keep up the exceptional work 👏👏👏👏

@keyc.1109 7 месяцев назад

I am an AuDHD parent with a confirmed ADHD child who is also possibly autistic. I think a more in the approach is the best way to help autistic. Normalizing autism as in it's a difference that means we need a little more help in certain things but are no less intelligent than anyone else. A similar way to how society is getting used to the deaf and the blind. Their disabilities are also invisible but they are being shown as normal people with extra needs. The verbal autistics should advocate for those who can't and give them a voice. ABA should be more about educating about social situations so autistic individuals can better navigate the world and autistic behaviors should never be stopped but redirected to more situationally appropriate stims. Example, my son is never going to be able to stand still but it's not safe for him to run around so I encourage him bounce in place or dance. The same way we can teach children to moderate their voices we can moderate behaviors based on situations. But the child's needs should always be first and foremost.

@Catlily5 7 месяцев назад

But some people with autism are less intelligent. They still deserve to be treated well.

@BlueRoseHelen252 7 месяцев назад

I am a mum of 3 children. 2 girls who are autistic and a boy.who is waiting for his ADHD assessment. I was surprised when on 18th Nov this year (2023) when our 2 daughters were both diagnosed on the same day as both being Autistic after a 2 year wait and me spending those 2 years buried in the research rabbit hole, the doctor referred to them as both High functioning and low support needs as if we as parents would be upset if it was anything else! I was assuming they would be level 1 but I wasn't expecting him to use the term Aspergers seeing as there has been a shift in the language used for a terms when speaking about Autistic people. I too am going to get myself onto the waiting list for an autism assessment once my son has been assessed for ADHD he's also been on the waiting list for 2 years now....I am 99.9% sure I am autistic, and I am 60% sure I have ADHD too. I was just surprised at the old fashioned style use of language when my girls were diagnosed...I think there does need to be updated terms for the way people speak about autistic people. I am still fairly new to all the terms that should and shouldn't be used but this surprised me. I can understand my mum using the term high functioning as she has grown up with hearing that term but even she is starting to change her language a bit. Sorry I'm rambling I'm drained today. Love your videos always very informative and always learning. Thank you

@turtleanton6539 7 месяцев назад

❤

@karladolman9664 6 месяцев назад

There is an Autistic content creator on RU-vid, who did a vid about parenting Autistic kids, a huge amount of it was very good but a lot of it depended on the parents being neurotypical and I commented that a lot of things are easier said than done when one or both parents are neruodivergent. The response was "Yes I agree. That's why it's important to speak up about not having kids if you are ND"

@theantiskiasystem2260 7 месяцев назад

Very good video! Informative, structured, and a good starting ground for anyone wanting to improve the lives of... everyone, I'd say. (Because I believe everyone has influence on others, and that influence spreads as ripples throughout society.) Thank you !

@gbail9566 7 месяцев назад

Thanks, Thomas. Love your general attitude focusing on what might be helpful. Let's understand each other. Different suffering is still suffering. I'm unclear about details of what is labeled eugenics? Machine Learning research recently used genetic markers associated with autism to define what proteins could be associated with those genes, including some that were previously unknown. Is that eugenics because genes are involved, or produced by Machine Learning? Seems like these issues can be separate from emotionally charged methods, just as ABA could be. Seems to me like basic science about autistic metabolism is also a subset for human metabolism. I am certain that unintended consequence, especially social and political are inevitable, because science is not always for greater good, but basic understanding and agreement likely has benefits too

@Catlily5 7 месяцев назад

I heard some people in the autism community are against genetic studies of autism because they fear that they will be used to abort fetuses. Like many Down Syndrome fetuses are aborted.

@meryluk 7 месяцев назад

Extremely helpful. Thanks again Thomas.

@turtleanton6539 7 месяцев назад

Indeed😊 what a great video

@karladolman9664 6 месяцев назад

Have you looked at any vids/work by Thomas E Brown on 'high functioning'/'Asperger's' and the crossover with ADHD and the importance of keeping some kind of understanding of Autistic types?

@leslie.bluquoise 7 месяцев назад

Thank you for these videos.

@mallagecko6093 6 месяцев назад

THANKYOU

@RatsPicklesandMusic 7 месяцев назад

Fantastic video!! I'm a 31 year old autistic adult with an autistic mom. :) This was really well thought out.

@ThomasHenley 7 месяцев назад

Thanks a bunch! I’m glad it’s been received well 😄

@Catlily5 7 месяцев назад

I have level 2 autism but I wasn't diagnosed until age 47. My autism was hidden by mental health difficulties. I think that parents of autistic children and autistic adults don't respect the problems that each group has. The parents see that their children struggle in different ways than ASD 1 adults. This is valid but they ignore the suicide rates. I also think that ASD adults ignore the difficulty of raising an ASD child with a lot of support needs.

@Catlily5 7 месяцев назад

Scientists are sorely mistaken if they think they know who should live or die. They would have killed off Einstein and Tesla just to name a few people. Flaws and genius often go together. Those genes are linked. You are more likely to be mentally ill if you have a high IQ. You can't eradicate problem genetics without eradicating wanted genes at the same time.

@ThomasHenley 7 месяцев назад

Thank you for your input! It’s very clear to me there’s a lack of understanding or perhaps empathy from both sides; not everyone of course, but it’s just something I’ve noticed

@Catlily5 7 месяцев назад

@@ThomasHenley I have definitely noticed that as well and I agree with you that it is unfortunate. I think that it would benefit both parents of autistic children and autistic adults to work together. I think that the gap will narrow somewhat as more parents are diagnosed with autism.

@neridafarrer4633 7 месяцев назад

So ... I'm diagnosed with ASD2 and ADHD combined types, but, I'm not intellectually impaired. I'm "twice exceptional" with a much higher than average IQ, I just have debilitating co-morbs, like complex PTSD and that translates as agoraphobic tendencies and social avoidance tendencies and thus I have higher support needs. The reason I'm specifying this is because ASD2 is NOT necessarily an indication of low IQ, in fact last time mine was tested it was 145. ASD2 is merely an indication of higher support needs than ASD1. Just to be very clear. I'm not one who likes the "high functioning" "low functioning" labels, they are misleading and reductionist. If people met me they would assume that I am "high functioning" if they believed my diagnosis at all, as I am very good at masking. I am warm. I can make eye contact when needed. I am articulate and intelligent and I have learnt, by my age, some stellar "surface level" social skills, and thus would be thought of as "high functioning" but, I'm exceedingly monotropic, have debilitating executive functioning issues, I'm painfully sensitive on sooo many levels and just not capable in a vast variety of ways. It's just not that cut and dried. Sorry to complicate things, but that's life eh?

@Pika999 6 месяцев назад

You are like me then. I'm also ASD 2 and do not have intellectual disability, though I am average intelligence rather than above average. I was diagnosed at age 4, and had to go to a special school starting from grade 5 as the public schools in my town were very bad when it came to me specifically. I was bullied, I was ignored, I was unable to do my classwork a lot of the time because I was overwhelmed, which was not good because I got accused of being lazy, even though I was physically incapable of doing anything, I just shut down. And unfortunately a lot of the same issues carried over to the special school as well, as I was still bullied and still struggled with content I was overly sensitive to (I am very sensitive, probably too much for my own good). I write much better than I speak, I'm EXTREMELY monotropic, I have trouble with caring for myself and therefore can't live on my own, my executive functioning is very much non-existent and I hyperfocus a lot on my special interests and my creative endeavors (my creativity helps me to be able to express myself much better and more effectively), so therefore I often just outright forget to do the basic daily care stuff on top of struggling with performing the tasks in the first place. I also have debilitating sensory issues and I need routine in my life or my anxiety skyrockets (and I have GAD, SAD, PTSD, and OCD tendencies, so I have severe anxiety basically all the time). I can't mask though and I am very prone to meltdowns...even in public...which sucks. Eye contact is a big issue and so is reading emotions and body language, as well as sarcasm (that's a HUGE one for me). Yet I am still considered "high-functioning" by the general public. I don't like functioning labels either. I don't get along well with neurotypical people, all of my friends are either also autistic or are neurodivergent in some way. And even after spending time with them, I am exhausted and have no energy for at least four days after the day I hang out with them. So yeah, all this writing just to say that I think you and me are a lot alike. Sorry about the long excessive reply, this always happens for some reason. 😅

@karladolman9664 6 месяцев назад

Except of course if you hit the sweet spot of being an Autistic adult who is also a parent of Autistic children. (except of course all the huge challenges that go with that). Which is where I think research on parenting Autistic children should start, regardless of 'level' of Autism, Autistic people in general, but especially parents who are Autistic have to offer on the subject of Autistic parenting. Even non parent Autistics have more insight into what is required for parenting Autistic children than non Autistic parents. The best practice would be connecting Autistic adults (both parents and non parents) with non Autistic parents of Autistic children and schools, pre schools/nurseries, youth clubs, sports clubs etc (obvs in ways that are comfortable for the Autistic adults involved, it should be them designing the ways they provide this outreach).

@thuggie1 7 месяцев назад

Thomas, you can be our loan wondere, leaving the vaul to enter that great divide just remember to take your pipboy 3000. You can do it. Sorry fallout entered my head

@MrDaydreamer1584 7 месяцев назад

We should think of autism in terms of "degree" instead of "functioning" or "support needs." Its similar to burns-- there are 1st degree burns, 2nd degree burns, 3rd degree burns. So there would be 1st degree autism, 2nd degree autism, 3rd degree autism. A person with 1st degree autism has a mixture of autistic and non-autistic traits. A person with 3rd doesn't have any non-autistic traits--- they are fully autistic.

@noraha6617 6 месяцев назад

It is important to say people with Autism an avoid autistic people. We should separate the person from the disability.

@ThomasHenley 6 месяцев назад

That’s not how a lot of autistic adults see it, for me I can’t separate autism from myself, I’d be a completely different person if I wasn’t autistic

@carolynv8979 7 месяцев назад

Neurodiversity is just that, diversity. That’s what eugenics is trying to “cure”

@johnrice1943 6 месяцев назад

Levels of autism lol. Just silly. That's what a GAF score is for is to determine level of functioning. It's separate from diagnosis. No one is more autistic or less autistic. Either you're autistic or not. Comorbidities are just that. Executive function may be affected by diagnoses, but it isn't the diagnosis.