Health, Rights, and Inclusion: Addressing the Needs of Aging Autistic Individuals (COSP19 Side Event)

Good morning, everyone.
Thank you so much for being with us today.
I'm Alistair De Gaetano, and I am the chair of the Autism Advisory Council in Malta.
And we'd like to welcome you to this side event, which is also being broadcast live on UN Web TV that is being hosted by the Permanent Mission of the Bahamas alongside the Permanent Mission of Malta, to the United Nations, with the collaboration of the Autism Research Institute, United States and a number of distinguished experts from around the world, as well as Malta's Commission for the Rights of Persons with Disability.
We have a panel of persons like with lived experience with professional experience in the field, However, the main thing we'll be focusing on is the life course.
Autistic people, when you hear the term, we think of somebody who was a child many times.
However, children do grow up, they become adults, and they also eventually age.
This is the intersection that we do feel we have to explore, especially at this crucial juncture where you have 20 years since the CRPD was adopted, and we are working within the framework of the SDGs where no one is to be left behind.
So we want to leave no one behind, especially with this cohort.
We're going to hear experiences from different countries, from different experts, people who actually live through this and people who work with autistic people on how we can actually make sure that there's quality of life and also the right supports in place to make sure that autistic people can age with dignity.
So what we will do is we will have a number of speakers after the initial words of welcome, and then we'll open the floor, following which we will have a discussant with us who will wrap up matters.
What I will do now, I will start with asking our distinguished guests to give words of welcome.
I will actually start with Ambassador Stan Schmidt permanent representative of the Bahamas, United Nations.
The floor is yours.
Thank you.
Great.
Excellency, distinguished delegates, advocates, friends.
On behalf of the permanent mission of the Commonwealth of the Bahamas, together with the Ministry of Social Services in the Bahamas, it is my honor to welcome you to this event under the agenda Health, Rights and inclusion, addressing the needs of aging autistic individuals.
I thank our co sponsors, the permanent Mission of the Republic of Malta, the Autism Research Institute, and Malta's Commission for the Rights of Persons with Disability for making this event partnership possible.
I wish also to acknowledge the presence of the accomplished experts gathered with us, including our distinguished panelists, among them, doctor India Grimes.
Good morning, and again, a warm welcome to you all.
As life expectancy rises across the world, we are confronted with the dynamics of aging not being a single shared experience.
For the artistic, later life brings distinct challenges that our health and social care systems have been slow to engage, perhaps even as little as recognized.
Autistic adults are more likely to live with co occurring physical and mental health conditions and left to navigate communication and sensory differences within systems never designed with them in mind.
Too often, the result is delayed diagnosis, unmet needs, social isolation, and a further diminished quality of life.
These outcomes are not inevitable.
They are the consequence of fragmented services, limited provider training, and environments that have failed to accommodate the full diversity of human experience.
The convention gives us both the framework and the obligation to do better.
Article 25 on the right to Health without discrimination, Article 19 on inclusion in the community, and Article 12 on equal recognition before the Law and supported Decision making.
This morning's event will explore how more inclusive policies and systems can support autistic persons across their lifespan.
In this regard, the lived experience of autistic persons must shape the research we fund, the policies we adopt, and the services we deliver.
We are grateful here then this morning for the opportunity to learn from one another, to share our interests, and where possible, to coordinate those interests into shared action for mutual societal impact in health services and across the wider arc of the rights of autistic adults.
In doing so, we must now turn our attention to resourcing our communities, ensuring that the infrastructure and personnel are in place for the transition that comes as caregivers themselves age.
In our national landscape, in recognition of the increasing number of autistic persons, the government in its recent budget communication, allocated funds for autism services in addition to a grant to our local autism support civil society organization.
We are also reducing the cost of work permits for live in carers, for the elderly, and for those with special needs.
Today's exchange offers an important opportunity to examine these issues more closely, to hear from leading experts and practitioners, and to explore practical approaches that can help advance more inclusive policies, stronger support systems, and better outcomes for aging autistic persons.
Financial resources alone are not enough.
We must also ensure that human resources, community support, and housing options are in place to meet the needs of aging autistic persons and others with disabilities.
In the Bahamas, as in many societies, cares most often provided by family are a reflection of both our cultural values and our practical realities.
What is timely is that as parents and caregivers themselves age, we address whether our systems are capable of ensuring continuity of care and whether our systems safeguard the dignity and independence that every person deserves.
I thank you for convening this event and trust that the partnership it offers presents the opportunity to shape the policies and invest in and incorporate the infrastructures that are relevant for the lived realities of the artistic community.
I thank you.
Okay.
Thank you very much for that, ambassador.
Indeed, one of the main things that you mentioned was partnerships, and that is one of the key things we actually want to have from Csp in general, but also from this grouping, that of seeing, let's say, common struggles, but also each other's best practices and identify how we can actually build upon that and find common ways forward, both as small countries like Malta and the Bahamas, but also looking at common strands and mentioning my country Malta before passing on to our deputy ambassador.
Um, I'd also like to recognize in the room with us MEP, a member of the European Parliament, Alex Ads Aliba, who is not only like Maltese, but also co chair of the European Parliament's Disability Intergroup.
Doctor Ads Aliba will also be discussing, offering us some views after the panelists and some guests from the floor will have intervened.
Now I pass over to Deborah Borch, who is Deputy ambassador for Malta, from the permanents of Malta to the UN.
The floor is yours.
Thank you.
Thank you, dear Alistair.
Excellencies, colleagues, distinguished delegates.
Thank you to the permanent mission of the Commonwealth of the Bahamas for organizing this event and it is indeed a pleasure for us as Malta to co sponsor and to be part of this important discussion, which is also an opportunity to share best practices together.
In 2021, Malta took a key step forward fulfilling its obligations under the CRPD.
In line with the person centered human rights based approach underpinning this key text, we set forth a holistic roadmap addressing the whole of the life course of autistic people.
Malta's first national autism strategy acknowledges the fact that autism is not merely a phenomenon limited to children.
While early detection and intervention are key to ensuring positive outcomes later on in life, at times, crucial aspects such as transitions across the lifespan were being neglected.
Today, several state parties, including Malta, have adopted approaches that reflect a growing emphasis on neoaffirming care and support for neurodivergent individuals, including autistic people.
No less important are the needs of older persons that are rightfully receiving increased attention, including through discussions at the UN level.
Malta has long been at the forefront of this course.
Indeed, our country has an aging population and has also since 1987, hosted the UN International Institute on aging.
It was therefore fitting that last October we partnered with the Autism Research Institute to host a think tank on autism and aging here at the United Nations.
This set the ball rolling for elevating discussions among academics and practitioners that had been ongoing for a number of years while seeking to connect partners involved in the wider framework of disability and social rights into these efforts.
I am proud that along the permanent mission of the Commonwealth of the Bahamas, the Autism Research Institute, and our colleagues from Capitol, we are marking the 20 years of the CRPD by bringing this discussion, the conference of state parties.
It is important to move from policy to practice, raising awareness among policymakers while engaging persons with disabilities, whether autistic people or their allies, as well as their representative organizations to be partners along this next leg of our journey.
I look forward not only to the exchange of views at today's side event, but to the connections that a platform like the COS enables.
The partnerships forged here have the power to ensure that older autistic people are no longer left behind.
Thank you.
Thank you for those words, Deputy Ambassador.
Indeed, like with Malta, we have always been very strong when it comes to older persons.
However, we count on the partnership and the expertise of other people here to be able to make sure that we have an intersectional approach, especially when it comes to autistic people.
And for this, I will actually pass on to the person who actually started all of this collaboration on autism D at the UN, doctor Stephen Edelson, who's the Chief Science Officer of the Autism Research Institute, and who has a star studded past when it comes to field of autism.
Doctor Edelson has been with the Autism Research Institute for nearly 50 years.
Um, before becoming executive director, he researched with a number of key figures including doctor Bernard Rmland who was a pioneer in autism, also involved with Autism Research Institute, and his expertise is in the behavioral, biomedical, sensory, cognitive, and diagnostic fields.
He also has given his advice to the Autism Society of America on the advisors panel, as well as being former president of the Autism Society of Oregon.
This is just a little snapshot of what doctor Edelson has done, but I'll let you hear more from him.
The floor is yours.
Thank you, Alistair.
Good morning, distinguished delegates, representatives of member states, colleagues, advocates, researchers, clinicians, autistic self advocates, and honored guests.
On behalf of the Autism Research Institute, I'd like to welcome all of you.
For decades, the world has viewed autism primarily through the lens of childhood.
We have invested in identifying autistic children, educating autistic children, and supporting autistic children, and those efforts have changed lives.
But there's a simple truth that public policy has been slow to recognize.
Autistic children grow into autistic adults and autistic adults grow older.
Today, millions of autistic people around the world are entering middle and later life.
Yet many are doing so within health care systems, social service programs, and public policies that were never designed with them in mind.
Too often, they're overlooked in health care, they're overlooked in research, and they are overlooked in public policy.
This is not because the need does not exist.
It's because we have not made it a priority.
Too many aging autistic adults face barriers to health care, untreated physical and mental health conditions, and uncertainty about who will stand beside them when parents and lifelong caregivers are no longer there.
These are not simply medical concerns.
They are not simply social concerns.
They are human rights concerns.
Our purpose today is not merely to describe problems.
Our purpose is to explore solutions, strengthen collaboration, and encourage action.
Researchers, healthcare providers, governments, advocacy organizations, and autistic people themselves all play a role.
Most importantly, autistic individuals must be central participants in shaping the policies and supports that affect their lives.
Our hope is that this discussion helps ensure that aging autistic adults are no longer an overlooked generation.
Thank you for joining us, and I look forward to our conversation.
Thank you very much, doctor Edelson and with that we actually get into the conversation.
I think something which would be really useful is to give a recap of where we came from and where we actually stand.
As was mentioned earlier, there was a think tank at the UN last October on autism and aging, where a number of key points came up, which we'd like to build upon.
For this, we're going to have Christopher Palmer from the MTs Commission for the Rights of Persons with Disability.
Intervening.
He's projects manager at the commission.
However, his experience goes way back.
He's worked in several countries such as the UK and the United States leading the multidisciplinary teams.
He's also seen both the aging side of things.
For example, working at the Alzheimer's Disease Research Center, like Wake Forest Baptist Medical Center in the US.
He's also been in senior management roles in the UK, working on service innovation and dementia and also mental health.
Um, his academic background is in mental health science from the UK, has also focused on mild cognitive impairment and Alzheimer's disease, as well as health and social care, and he currently works in the area of disability rights, but also with autistic people on his team.
So actually brings together a wealth of experience like working with aging, but also leading projects together with autistic people focusing on autistic rights.
Chris will give us an overview of the discussion so far and also what happened last October.
If you're using any devices, please make sure to use headphones if possible.
Thank you.
Chris, the floor is yours.
What I will do, since the soccer World Cup is here also, when you have 3 minutes left, I'm going to show you a yellow card.
When you have 1 minute left, I'm going to show you a red card.
Chris, over to you.
I'm here to give you an overview of a think tank session that we held in October last year, actually at the UN.
There were 19 participants and we covered five countries.
There was people from Australia, Canada, Ireland, Malta, and the USA.
It was a mixture.
Participants included autistic adults with lived experience, family caregivers, clinicians, advocates, researchers, and policymakers.
So building on what Alison and Steve have just said, why is this an area that we dedicated a think tank to? Well, approximately 90% of autistic adults over the age of 40 are estimated to be undiagnosed.
This means the vast majority of older autistic people are navigating complex health and social systems without ever having received an explanation for their experiences.
Among autistic adults over 64, dementia prevalence approaches 35% when compared to around 10% in age matched non autistic peers.
This is a profound disparity that health care systems are entirely unprepared to address.
We are living through a historical moment.
We are witnessing the first generation of people diagnosed with autism in childhood and they're now entering adulthood.
This has never happened before at this scale, and our systems were never built for it.
So one of the first themes that we discussed at our think tank was the importance of late diagnosis, identity, and communication.
What are the benefits of receiving a diagnosis later in life? Well, receiving a diagnosis later in life can be profoundly life changing.
For example, we shared a case study of a woman who was diagnosed in her 70s.
After her diagnosis, she reconnected with family members after decades of silence.
A late diagnosis enables self compassion, reconciliation, and often renewed purpose.
It shifts the narrative from personal failure to neurological.
So what were some of the barriers? The Services for autistic people are overwhelmingly child focused.
Older adults are often left to navigate systems that were not designed for them.
Healthcare environments, waiting rooms, hospital clinics can be profoundly overwhelming for people with sensory sensitivities, harsh lighting, noise, and unpredictability are common barriers.
Additionally, lifelong masking and adaptation to non inclusive environments has been linked to anxiety, depression, and even risk dementia later in life.
Following this, we moved on to our next theme, which was healthcare, communication, and navigation.
We discussed three different aspects here, patient facing tools.
We had a huge conversation on health passports.
Health passports are a document that conveys a person's sensory needs, communication preferences, and required accommodations, and they can drastically improve healthcare encounters.
To date, there's over 100 adaptations which have been cataloged.
Again, lower stimulus waiting areas, redesigned call systems.
These are not niche accommodations.
The beneficial to many hospital patients, including older adults and people living with dementia.
Autism needs to be consistently identified and recorded in electronic health records.
Without reliable identification, it is impossible to plan appropriate care or conduct the secondary data analysis that could identify disparities and drive quality improvement.
One of the key areas was that autistic professionals working in health care bring irreplaceable insights.
Their involvement should not be tokenistic or advisory.
Programs should be co designed and co led by autistic clinicians and community members from the outset.
Now briefly cover some clinical and medical care.
Older adults face a range of elevated health risks that are often under recognized and undertreated.
For example, compared to neurotypical peers, older autistic adults have higher rates of cardiovascular disease, osteoporosis, et cetera.
Among those with co occurring intellectual disability, risks of epilepsy, respiratory infections and thyroid disorders are particularly elevated.
One of the key care gaps that we discussed was diagnostic overshadowing.
Diagnostic overshadowing is the tendency to attribute new or worsening symptoms to autism itself rather than investigating them as potentially independent health problems.
This bias can cause serious conditions to be missed, of treatment to be significantly delayed.
Routine age related screening for vision, hearing, cancer, often assumes verbal communication, letter recognition, and the ability to follow abstract instructions.
These assumptions can exclude many autistic adults.
Thank you.
This slide shows some of the most striking data in the presentation.
Among autistic adults age 30 to 64, dementia prevalence is estimated at eight to 9% compared to roughly 1% in non autistic peers of the same age.
However, among those over 64, prevalence approach is 35% compared to approximately 10% in age match controls.
These figures come from analysis of large scale Medicare and Medicare databases encompassing approximately 115,000 individuals.
We're not looking at a small scale study here.
So why might dementia be elevated? Well, 60-80% of autistic children show biochemical evidence of elevated oxidative stress, and imbalance between harmful free radicals.
And the body's antioxidant defenses, mitochondrial dysfunction affecting the cells energy produced in machinery has been widely documented notice and research.
Newer information is another consistent finding.
Critically, the same biological processes, oxidivated damage, energy impairment information are central to Alzheimer's disease and related dementias.
We then had a discussion surrounding modifiable risk factors because approximately one third of dementia cases in the general population may be preventable through management of risk factors including hypertension, diabetes, obesity, depression, chronic stress.
The same logic applies here for autistic adults.
One of our key members of the thing, doctor Mary Doughty and colleagues from Ireland have produced the autistic space framework and this took up a huge.
I've got a yellow card already.
This took up a huge aspect of our thing because it's such a vital tool that was developed.
As you can see, S is sensory needs, the needs to reduce harsh lights and noise, P predictability C schedules, consistent routines, familiar staff, A for acceptance, autism as diversity, adapt care to the person.
Communication, clear, unambiguous, use visuals or assistive devices, and empathy, pain, and distress may present atypical.
Social isolation was then discussed as not simply an emotional problem, it's a public health issue and a human rights concern.
For autistic older adults, it's also one of the most perversive and under addressreed challenges they face.
Social isolation is now identified as a modifiable risk factor for dementia, placing it in the same categories as hypertension or diabetes in terms of prevention.
We also discussed one of the most fundamental rights at stake for autistic people as they age and the right to make decisions about their own lives.
Article 12 of the UNCRPD affirms equal recognition before the law and the right to legal capacity regardless of disability status.
The problem sorry, General comment number one to the CRPD clarifies that states are obligated not merely to recognize legal capacity, but to provide the necessary support to enable its exercise.
What can the autistic community learn from other intersecting communities? Very briefly, both autistic and LGBTQIA plus individuals face elevated rates of bullying, discrimination, and adverse health outcomes.
These risks are compounded at the intersection.
Autistic LGBTQIA plus individuals face compounded disadvantage, further amplified by ageism later in life.
The LGBTQIA plus community's emphasis on chosen family and peer network offers important lessons.
When biological family support is absent or fractured, community led identify affirming spaces become essential.
I will sum up before I get the red card.
Six of the main end goals of last year's think tank that we will hopefully be moving into this year are the need for longitudinal studies on aging and autism.
The needs of people in their 50s, 60s and 70s cannot wait another decade.
Reform health care systems, individualized care plans, incorporating electronic health records, to reduce administrative burden, to strengthen legal protections, supported decision making frameworks aligned with the CRPD, to build community and connection, artistic led identity affirming community spaces need sustainable funding.
And to uphold human rights.
Aging as an autistic person must mean dignity, inclusion, and continued participation in society, not diminished expectations, not invisibility, not reduced access to care.
This is a human rights commitment and it requires systematic, not just individual action.
Okay.
Thank you.
Thank you.
Chris.
Welcome.
We avoided the red card by a whisker, but that was a very comprehensive.
It's a great background, so we can actually now go into something more specific.
I'd actually start by going over to our colleagues, back to our colleagues in the Bahamas and having also an experience of another Island Nation Day.
So I'd like to work out with us doctor India Grimes.
So also like a person who has an extensive background both academically and also professionally, like needless to say, so she studied both back in the Bahamas, University of West Indies, especially at the Aging and the Wellness Center of the University of West Indies, also like the United States at Howard University.
Has a background in medicine and surgery, focused on gerontology, geriatric psychiatry, self advocacy, but also work and family practice, is medical services advisor to the public hospitals authority in the Bahamas, focuses on aging and wellness as well as rehabilitation and also as a consultant in geriatrics, and has received a number of honors and awards, like a number of different professional affiliations in with the American College of Healthcare Executives, chairs of National Council of Oder Persons of the Bahamas and has presented at a number of different conferences and academic gatherings and was awarded a number of research grants, including on impact of exercise of cognitive functioning in the elderly and exercise programs for the elderly.
However, let you hear from doctor India Grimes herself.
The floor is yours.
Doctor Grimes will actually present on the topic of a and behavior perspective, unique intersect realities of autism and aging.
Doctor Grams, the floor is yours.
Thank you.
Thank you, Alistair.
Good morning, Excellency', distinguished colleagues, ladies and gentlemen.
It's an honor to be here to be a part of this conversation about aging across the autism spectrum with a focus on the Bohemian perspective.
We know that autism is a lifelong neurodevelopmental condition typically diagnosed in childhood and does not disappear as a child grows to an adult.
First described in 1943, the first children identified are now seniors, many very functional and active in their communities.
A great deal of effort has been spent on supporting pediatric cohorts, creating a service cliff where resources vanish or reduce at adulthood.
Consequently, we are basically unprepared to service the older autistic population, particularly in the Bahamas.
Globally, according to the World Health Organization in 2021, one in 127 persons are autistic.
Closer to home in the Caribbean, there are an estimated 344 persons per 100,000 persons living with autism.
In the Bahamas, mental, neurological and substance use or NSS burden quoted in 2019, reported autism to account for a vast majority of burden in the younger than five year age group.
In the ten to 40 year age group, the NSS burden was a quarter to a fifth of the non communicable disease burden with no specific disorder singled out.
In the 80 year plus group, Alzheimer's disease accounted for 50% of the disease burden.
The adult diagnostic dilemma speaks to this lifelong condition and studies have shown there are stark age disparities within the diagnostic infrastructure.
A United Kingdom analysis published in 2025 identified a precipitous drop in autism diagnosis in midlife and older age suggesting nine out of every ten autistic persons older than 50 remain undiagnosed or misdiagnosed.
Next.
This diagnostic challenge is unfolding against a backdrop of rapid global aging.
According to the United Nations in 2019, 16% of the population in the world were older than 60.
This is expected to rise 22% in 2050 and 36% in 2,100.
Further, the vast majority of the old 60 year population live in the low to mid income countries with a rise expected to 80% by 2050 and this shift will exert massive economic and structural pressures on already stretched thin health systems in developing countries like the Bahamas.
Population aging trends in the Bahamas mirror global trends.
9.3% of the current population is over the age of 65, with a life expectancy on average of 76 years.
Seniors are projected in the Bahamas to outnumber children in the coming decades.
The dependency ratio is already at 38.5.
The Bahamas has a shrinking, active working and caregiving pool to support dependent seniors.
Seniors comprise of 16% of our ER admissions in our hospitals and 17% of the hospital admissions averaging 11 days stay in hospitals.
We are at the point where aging policy and disability planning must converge.
Traditional health aging models like the famous Ro and Con framework, classified persons with disability, including autism as unsuccessful ages and thus excluded the disorder from gerontology management training.
Established validated adult autism assessment tools are an absolute research priority.
Furthermore, neurodivergence training must be incorporated in geriatric specialty curriculum.
Studies have highlighted that autistic adults are at risk of premature mortality as they face elevated lifetime risk of cardiovascular issues, metabolic conditions, sleep disorders, nervous conditions such as epilepacy, just to name a few.
Studies like that done by Hawaiian et al in 2017 reveal autistic individuals to have negative incomes with regard to avoidance of disease and disability.
Diagnostic screening gaps exist for people with autism challenged by sensory and communication barriers.
Therefore, open access to timely and sensory accessible preventative measures, health measures is critical for our aging autistic population.
Mental health attention is also operating at a deficit.
In Latin America and the Caribbean, 86% of the youth do not receive formal treatment.
This directly compounds care in adulthood.
We also have limited mental health professionals at 8.7 per hundred thousand people in our region.
This will also directly impact the autistic population who have co occurring psychiatric conditions.
Further to preventative health screening, mental health management, autistic individuals will need support navigating late life changes.
As we heard before, women will encounter menopause and autistic women already have challenges with psychological and somatic changes and so this is further complicated in menopause.
Retirement looks very different for autistic with loss of professional routines that can trigger immense anxiety.
We have already heard about the dementia burden in the autistic population.
To address these overlapping crises, we must transition away from the traditional health models that are not in autism inclusive and adopt frameworks that support autonomy, caregiver support, and even transition living in sensory friendly environments, and all of that to optimize quality of life for the autistic aging population.
In the Bahamas, a reorganization of services will not be starting from scratch.
We're not starting from scratch, fortunately, because we have entities like the National Commission of Persons with Disabilities, the Mental Health, Services Board, National Council of Older Persons that are all active, backed by legislation and ministerial support that have laid groundwork to support aging behemians.
They are also anchored by community ecosystem of organizations like Reach Bahamas, Seahorse Institute, and even the University of West Indies Global Campus, which has pioneered its first of its kind specialized autism training program to build local capacity, but we need to strengthen the collaboration between the entities to formulate plans specifically for aging and autism in the country.
To develop such plans, the Bahamas needs to get behind prioritizing and commissioning a formal national autism prevalence study and autism health care needs analysis.
This is absolutely essential to build and fill visible care gaps.
In conclusion, the needs of the aging population impact every facet of society and the aging autistic population are no exception.
In the Bahamas, policy and practice priorities are essential to forge intersectorial shared action to advance research, strengthen legislation, training with financing to protect and advocate for healthy aging, healthy aging throughout the population and across the spectrum.
Thank you.
Thank you so much, doctor Grimes.
That was an amazing presentation.
I particularly appreciate the fact that you mentioned, first of all, the importance of moving to our rights based framework.
Yes, we have to look at health, but we have to look at it within the context.
At the end of the day, there's also the CRPD here.
Secondly, also the fact that we should not reinvent the wheel.
For example, with expertise that there already is when it comes to aging, legislative frameworks, that should be part of our collaboration.
We have to deal with this topic, but not by starting from scratch, but looking at what we already have and building upon that, building upon our strengths.
And with that, I would like to move over to our next panelist.
Our next panelist, we'll look more at the healthcare aspect of things.
So we have doctor Margaret Bowman who will focus on healthcare and aging from a physical perspective.
Doctor Bowman has been practicing for a number of years.
She is a pioneering neurologist in the field of autism and is widely respected for her clinical care and research contributions.
That has focused on diagnosis and treatment.
Also theological and mental conditions.
Apart from laboratory research on neuro anatomy of autism, she is also committed to family support, has been so throughout her career, and she is currently based at Boston University School of Medicine, the United States, where she works as a neurologist.
Doctor Bowman, the floor is yours.
Thank you.
Thank you very much.
Thank you for all of you who are coming here today to listen to this.
I first I have to tell you that I'm trained as a child neurologist.
Then you have to ask yourself, what is the child neurologist doing here talking about aging and senior citizens on the autism spectrum? Well, as Alistair has already mentioned, I've been in the field for a couple of years, at least since the 1980s and as been mentioned here, the kids that I saw as kids are no longer kids, they're all growing up.
And one of the biggest frustrations that I and my colleagues who are in the pediatric world is that we can't find anybody, any practitioner to take over our caseload because there are very few adult doctors who are qualified, interested in, have any idea about what it means to take care of a patient on the autism spectrum.
This is the area in one of the many areas in which I would like to address today.
Next slide, please.
I'm just waiting for the slides.
Thank you.
Okay.
Good.
What are some of the issues here? Go back to one.
Sorry.
We have a little challenge here.
As I mentioned, finding a primary care physician who knows anything about autism is like finding, as they say, a needle in the haystack.
The number of those you could put on one hand, I would say, they just aren't there and part of that is because medical schools are not training doctors to look at folks on the autism spectrum.
We'll get into that in a little bit.
We've got the issues of emergency rooms and being admitted to a hospital, which is overwhelming for a lot of people on the autism spectrum.
We've got the issue of insurance, at least in the United States.
Who's going to pay for it if we have problems with that are complex here? How about medical conditions for adults, which we've heard a lot about already.
But there's nothing unusual about the kind of healthcare needs that these people have.
It's really how it's presented and how it's dealt with going forward.
Next slide, please.
To address some of the things that have already been mentioned here, we talked about cardiovascular issues, hypertension, and so forth.
I think a lot of the ones that get admitted are hearing problems or vision problems.
We have a number at least children for sure, who have difficulty with depth perception or visual tracking, for example, mental health areas, which one of my colleagues will talk about a little bit more later.
Gastrointestinal disorders are huge.
The data suggests that in autism, probably 60 to 80% of folks on the autism spectrum have some gastrointestinal issue during their lifetime.
Many of those present with symptoms that have nothing to do with gastrointestinal disorders.
They can present with something that looks like, pardon the expression, headaches, or it could be sleep problems, or it could be a bunch of other things, but it gets misinterpreted as being just autistic behavior, or it's just that they're just being irresponsible children or adults.
So this is being totally missed and misinterpreted and has to be corrected.
We talked a little bit about metabolic disorders that came up.
That's certainly a very good area of interest.
Cancer, there's nothing that keeps autistic adults from being cancer free, unfortunately, and we talked a little bit about motor and sensory challenges.
Next slide, please.
Okay.
Medical conditions, as I mentioned, can present with differently in adults on the autism spectrum and the symptoms are not easily recognized by the average physician.
I have to be personally very picky about who I refer these patients to and a lot of them are referring them back to my pediatric colleagues who have at least some idea about what kinds of symptoms we ought to be addressing here.
So I have seen a woman come in, 21-year-old woman come in complaining, she's minimally verbal, by the way, hitting her head and saying head hurts.
I said to the parents, I know you're going to think I'm a crazy lady, but I really want your daughter to see a gastroenterologist.
Happily, they went and saw the gastroenterologist.
The diagnosis was esophgitis.
Esophagitis was treated and no more head hurts.
Had nothing to do with any of the gastrointestinal symptoms.
We'll get to perhaps a little bit what that's about.
Atypical and disruptive behaviors may be signs of pain and discomfort and these folks cannot always express that.
Many are non verbal, probably about one third of the autistic population are minimally verbal or not verbal, functionally verbal, even using their communication devices.
They often can't point to or locate their pain and discomfort.
Another time I gave a talk at a conference and a young woman came up afterwards, very right, very articulate, on the autism spectrum, said to me, when I get sick, it takes me three days to figure out what's wrong with me.
They are not picking up on their signs and symptoms and they're There is something that's called interoception, which you probably have heard the term and if you haven't you should, which has to do with how we perceive feelings in our internal organ systems.
There's a growing data now that suggests that folks on the autism spectrum have significant difficulties with interoception or interpreting pain and discomfort or any other feeling that they have.
Next slide, please.
This was a survey that was done back in 2005.
Unfortunately, I would love to tell you that this was vastly different now, but I don't think it is at all.
This was a survey that was taken of medical students, residents, interns, medical students, deans of medical schools, and so forth and so on.
Look at how are they feeling comfortable taking care of folks on the autism spectrum or treating them or diagnosing them? Next slide, please.
What it found was, no, they're not and no they weren't in 2005.
Let me say to you that they haven't improved much in the last 20 years, which is unfortunate.
We don't have any new updated data to support this, but is out of my own personal experience, this seems to be the case.
Next slide.
Okay.
The other aspect of not only recognizing disorders is this whole issue of preventive screening.
How many adults on the autism spectrum actually get mammograms, for example? Not many.
Again, do they get tested for cervical cancer? Do they get tested for prostate cancer? How about colon cancer? Can you get a colonoscopy an adult? I tried to refer an adult to a adult gastroenterologist because I wanted to get a colonoscopy for I can't remember the reason any longer.
They couldn't do it because the adult lady couldn't do the prep that was required to get the colonoscopy, she didn't get the colonoscopy.
We have to come up with some strategies here that are more accommodating to these folks based on their needs and their tolerance of certain situations.
Next slide, please.
So the provider limitations, we've already talked about a little bit, the shortage of primary care physicians.
Unfortunately, in the United States healthcare system, there's this whole issue of productivity.
How many patients can you see in an hour story? And when you're working with somebody who's on the autism spectrum, this takes time.
You have to talk to the patient, you have to really spend the time to do it, and our system really is not set up for that.
As we've already talked about, many are not familiar with autism, it is not part of their medical education.
I can guarantee that.
There's not enough time.
If you're supposed to see a new patient every 15 minutes, that's not going to work.
Paperwork, we have to fill out all kinds of forms, which I personally hate, nobody I'm not alone on that.
Then we have insurance issues, who's going to pay for what and how much from our personal health care system here in the state, it doesn't really cover the kinds of things that a lot of these folks really need.
Next slide, please.
So just to say a few words about the emergency room in the hospital side.
Emergency.
Hello, next slide.
Emergency rooms are chaotic.
Anybody who's been to an emergency room is chaotic is noisy.
There are lots of lights.
You have to sit around and wait a long time.
Nobody really knows what they're doing.
They do, they're taking care of 15 other patients while they're taking care of that patient that there.
It's a chaotic situation.
It's totally overwhelming for somebody in the emergency room.
Happily, some hospitals now, including the Massachusetts General Hospital in Boston, has recruited somebody that's called the patient navigator.
So while our doctors may be forgive the term clueless in terms of how to take care of folks on the spectrum, you now have somebody at least in the emergency room and sometimes on the inpatient services who knows what the autistic person might need who can help with and who's considered a patient navigator.
This seems like a first step in the right direction.
It's certainly not the answer to everything, but I think it's, as I say, a good step forward.
Next slide.
So my parting words are this, we've got a problem.
We really are not in a position to be creating adequate health care for adults on the spectrum.
Physician exposure and training is I don't even know what nonexistent, I guess.
Consequently, I just put in a pitch here.
I'm involved with a group in Southern California to design a training program for health care professionals and we are about to launch a pilot program for physician assistants, what are called physician assistants in this country next month.
I realize it's a pilot program, it's only a start, but we've got to start somewhere.
We have to start training health care physicians to take care of folks on the spectrum.
Communication deficits are huge, sensory processing issues are huge.
Family professional and aquaacy policy changes that you've already heard need to be changed.
This is a critical area.
There's a data now that says at least in the United States that one in 31 folks on individuals are on the autism spectrum.
There's also data that says that every year, 50,000 autistic people past the age of 18.
This is a growing population and we cannot ignore it.
Thank you.
Okay.
Thanks a lot, doctor Baumann.
De just looking at that presentation, I saw, let's say, a lot of things resonated as an autistic person myself.
It's important to keep these things in mind going forward when it actually comes to health care and proper clinical practice.
What I will do since I'm also mindful of the time, before I go over to the last two intervenors who are dealing with mental health and community inclusion and also lived experience, which is extremely critical, I will ask already for some thoughts now from our discussant, from member of European Parliament, Alexa Aliba, and then after that, I will pass on to the other or panelists.
MP Adré, the floor is yours.
Thanks a lot.
Teresa and thanks for co organizing, I believe this very important session tackling one of the disabilities that is hitting us hard throughout Europe.
Maybe today we have more visibility, and so it is really important not only to focus on early detection when it comes to autism, not only to focus on children, but I think it's a step in the right direction also to assess how autism can ultimately affect the lives of older generations and those who are growing up because obviously, even people with disabilities grow up and therefore the challenges remain the same or are more sensitive.
It is really important to touch upon a number of aspects such as the impact of isolation when it comes to autism and the older generation and also higher health risk factors as we have here throughout the presentations that we had, which are more predominant when it comes to those who are aging and on the autism spectrum.
From my end, I would like to focus also on what we are doing in the European Parliament basically as a co chair of the Disability intergroup in the European Parliament and also as co chair of the mental health intergroup because obviously when it comes to autism, especially in the European Parliament, we try to work in tandem as in these two different intergros because obviously also when it comes to autism, it is heavily interlinked with mental health as a subject and therefore, there are a lot of links which we always try to push forward and share and we have a lot of members in the European Parliament who are active in both of these intergroups.
But basically, when it comes to autism, the biggest milestone that we had during the past years, and during the past months was the 2023 resolution on harmonizing the rights of autistic people.
This is also relevant when it comes to persons on the autism spectrum who are aging.
First of all, this resolution was the first joint resolution which was signed by all the political parties and all the political groups in the European Parliament speaking about early detection.
And for me, this is a very crucial point when it comes to autism.
I have witnessed firsthand early detection, education, guidance, specialized education, and the difference it can make not only in the early years but also when it comes to progression in the life of persons on the autism spectrum, equal access to health care, education, employment, accessibility, and this is also very important when it comes to people who are aging and they are on the autism spectrum lifelong support, which I believe, when it comes to EU funding opportunities and focus from the EU when it comes to lifelong support, especially when it comes to autism, it is next to nonexistent.
Therefore, these are some thoughts from my end.
I don't want to take a lot of time because there are more experts in the room who are much more knowledgeable when it comes to the subject today, but I wanted to give some background information on what is going on in the European Parliament.
But definitely today's session will continue to help us more to understand the challenges, the realities of aging people who are on the autism spectrum.
Thanks a lot, Alistair, and also thanks a lot for organizing this very timely and important session today.
Thanks a lot, MP Ajo Alia, and definitely would like to also count on the European Parliament and on the structures and also on you on being able to build up on the good work that has happened and take this very niche topic forward.
As the Bohemian messenger mentioned before, partnerships are crucial.
So we have like to focus on these points and work together and see how we can also have a regional perspective to things.
Since you also mentioned mental health, I will pass on to doctor Kimberly Armstrong, Solle mental Health Community inclusion, the clinical psychologist, Depart of Psychology, Semi Fraser University.
Psychiatry, University of British Columbia and spectrum works like consulting group like Canada.
She's involved with them.
As with her background, she's been working for over two decades with autistic people, assessments, Nurofirming framework like to care and support, has worked also at a number of other different institutions like in Canada and abroad and has presented at a number of conferences as well as work with different government agencies in Canada and outside of that with both autistic and autistic people.
Doctor Armstrong, like the floor is yours.
Thank you.
Thank you so much for having me today.
I just wanted to also make Margaret's point that I was trained as a child psychologist and now work with adults and seniors just because there's no one else that has been trained in adult or aging areas.
Research has found that most autistic adults have very poor mental health, most commonly being diagnosed with anxiety, depression, and OCD.
Over two thirds of autistic adults meet criteria for at least one co occurring mental health condition, and over two thirds meet criteria for three or more.
The most common is anxiety with estimates ranging widely 11-84% of autistic people having anxiety symptoms that negatively impact their lives.
A recent study found that older adults with high autistic traits were four times more likely to have high anxiety symptoms that worsened as they aged when compared with adults with low autistic traits.
There are several contributing factors to why anxiety is highly prevalent in autistic adults that are unique to this population.
Sensory sensitivities have been found to both predate and predict the later development of anxiety in autistic people.
In individuals with high autistic traits, sound sensitivity is correlated with higher anxiety and depression symptoms and lower quality of life.
Navigating a world designed by and for non autistic people is overly taxing for many autistic nervous systems due to sensory processing differences and is a barrier to inclusion in society.
Masking, which is the conscious or unconscious suppression or hiding of autistic traits to appear non autistic also plays a role.
While it helps non autistic people feel more comfortable, it comes at a great cost for autistic people, resulting in cognitive fatigue, loss of identity, and autistic burnout.
This burnout in turn results in lower ability to mask, a loss of functional skills, and at times otherwise verbally fluent people losing the ability to talk completely for a period.
Greater need for routine and stability also play a role.
This need is often underestimated or dismissed and is viewed as something solely to be changed rather than a tool that can help regulate the autistic nervous system.
The lack of understanding or appreciation of this by non autistic people around them is a major contributing factor to their poor mental health.
Itroception, which Margaret previously mentioned and emotion regulation challenges also need to be considered.
Almost from birth, many autistic people are repeatedly given the message that what they are perceiving and experiencing is not right, especially before receiving an autism diagnosis.
When they complain about noise being too loud or lights being too bright, they're told they're too sensitive.
When they cannot tolerate certain foods or clothing, they're told they're too picky, and when they're upset by a upset by a change in plans or the environment, they are told it is not a big deal, even though everything in their body is telling them otherwise.
Alongside any underlying biological differences in intraoception and emotion recognition, over time, autistic people begin to not trust their own sensations or feelings.
They learn to stop listening to their own body signals and ignore their distress.
Alongside social communication differences, this makes autistic people easy targets for manipulation and abuse by others.
Hormonal changes with menopause result in intensifying sensory sensitivities and communication differences and losing the ability to mask.
Many menopausal autistic women report having extreme meltdowns, experiencing intense anxiety and depression and feeling suicidal.
Clinically, we see an influx of older autistic women seeking autism assessments during menopause because they can no longer manage life the way they once did and the systems they previously relied on to manage stop working.
Difficulty accessing autism assessments or neurodivergent affirming therapy is a problem for autistic seniors worldwide.
When autistic people are unable to access an assessment, negative self talk and blaming oneself for not being able to do as much as others inevitably occurs.
Over decades, this is devastating for mental health.
Accessing an autism diagnosis makes it possible to change one's self talk to things like my brain works differently, of course, I'm not able to do things like a lot of other people, and it is okay for me to take breaks and say no to engaging environments where sensory or social demands are too high.
No.
Even when autistic seniors do receive mental health treatments, they are usually developed by and for non autistic people and do not consider the important role of sensory differences or masking.
Cumulative effects over decades of these factors are profound on autistic seniors.
Misdiagnosis and other conditions such as bipolar and personality disorders are common and most will never see a mental health professional who considers the possibility of autism.
Someone who's never been identified as autistic often feels they don't have a sense of identity because they have masked and downplayed who they are their whole life.
They have never had a belonging to a community of people who think, communicate and view the world the same way.
Their mental health declines further as their needs are not being met by any treatment they may be accessing and they struggle to communicate their distress and needs in a way that would be understood by a mental healthcare professional who has had zero training in adult autism.
Where do we go from here? Article 25B of the UN Convention on the Rights of Persons with Disabilities declares, state parties should provide health services needed by persons with disabilities specifically because of their disabilities, including identification and appropriate intervention and including among older persons.
To achieve this for autistic seniors, it's critical that all health and mental health professionals receive autistic co ed training on the full spectrum of presentations of autism in adulthood.
It is important mental health providers working with seniors have both knowledge about the heterogeneity of autism and humility in their work.
This includes the focus of mental health treatments for autistic people, shifting from changing the person to changing their environment and recognize the impact of the sensory environment and masking.
We also need more appropriate supports for autistic seniors to meaningfully participate in their communities.
Article 19C states that community services and facilities for the general population need to be available on an equal basis to persons with disabilities and they need to be responsive to their needs.
Having community spaces and health care facilities that have sensory environments with adjustable lighting and minimal noise is essential to reducing barriers for autistic people and autistic seniors.
More practical supports need to be offered such as help with transportation arrangements, scheduling and remembering appointments, and coordinating communication between services.
Having people who can complete forms with or for autistic seniors so they can access services and support, Day to day living skills is critical for mental health.
There's growing awareness around the world and an entire generation of autistic adults have not been identified or adequately supported.
By taking the steps outlined, we can move towards better mental health and more inclusive societies for all autistic seniors.
Thank you.
Thank you very much, doctor Armstrong.
This person needs no introduction.
Dina Gassner, one of the most amazing advocates, larger than live person, like social worker, mother, academic, Dina, I'll leave it over to you to actually give us a lived experience perspective on autism and aging.
F is yours.
This is a subject I wish I knew less about because maybe I wouldn't be a 68-year-old recently minted PhD person.
But I'm Dana Gassner.
I'm a senior research scientist at Drexel University in the Life Course Outcomes Laboratory.
Everything we do out of this particular laboratory is community engaged.
The information I'm giving you goes beyond my own personal lived experience as an autistic researcher, but it includes all of the constituents with which we work.
I do want to have you take a look at this beautiful slide that Christopher made for both of us today.
You can see the pattern in the papers, you know he did it.
This is my little niche of things that I like to research.
When we're looking at the costs of health care outcomes for autistic adults, one of the major barriers we face is what we're calling administrative burden.
Chris mentioned it in passing, but it comes according to the literature, from a combination of learning costs.
How do you find a system? How do you navigate that system? Financial costs, how do you get an evaluation paid for? How do you get the bus fare to get to your evaluation? Psychological costs, I believe, pervade all the other areas, but in the literature, it's a separate box for mental health issues that can arise from trying to fight these systems.
And the other piece that's missing from this slide, but it's not missing because Chris did it, it's missing because I forgot to mention it.
But it's the idea that even if we break through all of these systems, we're all going to continue to live under the federal poverty line in the US.
We're probably going to be living in poverty anywhere else in the world we are because we do not believe in a universal income for people to improve their quality of life.
That's very problematic.
That's still a positionality of privilege because in reality, there are still many nations in the world who've never heard the word autism or it doesn't have relevance for them yet in their cultural evolution.
I do want to say I 100% agree with my colleagues who have talked intensively about the need for more training for all medical providers, mental health providers, diagnosticians, pediatricians.
Everyone who is working in any human services field is working with autistic people whether they know it or not, and whether they're effective at it or not.
We do a really lousy job of training them.
How is it it's only been in the last five years the American Dental Association has mandated a semester of training with people with developmental conditions.
I can tell you that's not the case for OB GYNs.
They get zero training.
Only 3% of them have said they've ever treated a person before they leave their graduate school education, who has a developmental condition.
We also have similar problems for gender expansive individuals who are also denied gender affirming care under the guidance that, oh, you're not really gender divergent, you're just autistic.
Medical gaslighting pervades the autism community in terms of navigating and accessing health care.
We have very poor birth outcomes for mothers and people assigned female who decide to have children.
Menopause has been mentioned, you did a great job talking about that, but that's also an underserved area and medication management.
I just want to add that to the list of health care barriers.
Autistic people are often highly reactive to lower doses of medications.
It doesn't mean we don't benefit from medications, it means we need a softer hand in working with us as navigating that.
I also think we fail autistic people who are diagnosed later in life and many of our early diagnosed kiddos get it tremendously difficult because what we do is we hand them a diagnosis that's written in medical ease and we say, good luck with that and we don't do any follow up or aftercare to help them take the diagnosis off the paperwork and apply it in real life to how it's affecting their life.
It's not enough to be autistic.
You have to know because I'm autistic, these things happen.
Our providers are not adding that so what piece.
What are the implications of having autism is what human services providers need to know.
I can also say that Stephen asked me to tell a story and I'm going to tell you we've got a very recent experience in December.
After a year and a half of fighting cataracts, I finally decided to break down and get them removed.
I talked to the provider in advance.
I did all the best things.
I wore my self advocate badge, I told them exactly what I need.
What I need is not substantial.
I need lower lighting.
I need less noise and I need a contained environment.
I can't be with curtains and curtains and curtains of other clients.
They said, no problem.
I went in the first day.
It was like I died and went to autism treatment heaven.
They took me into a private room.
They kept the lighting low.
The lady wore a headset to put the IV in so she wouldn't have to turn on the overhead lighting.
After the care was finished, I was again returned to that prep room because it was a place where I could have quiet and come back from that.
It was unbelievable.
I was telling everyone what a wonderful healthcare experience I had.
Then I had to go back a week later to do the other eye.
I don't know who the wicked witch was that showed up that day, but she challenged me from the moment I walked in the room.
I said, Well, I don't know if they've told you, but it's in my record that I'm autistic.
I said, these overhead lights have to go and she goes, Well, then I'm just not going to be able to stick you or I might bruise you or hurt you.
Now she's threatening me.
If I don't comply to the way she wants to provide it.
I said, well, that's interesting.
A week ago, they had no problem with that.
She said, Well, I don't think I can work with you.
I said, I'm so glad to hear that because I know I can't work with you.
Then the person in charge came in.
But what if I wasn't an extrovert on steroids? I'm on the other end of that bell curve.
We think of autism is less, I'm too much of everything.
What if I didn't have this skill set? What if I didn't know to advocate for myself? Here's what I also want you to know.
All of those skills did not in any way alter the emotional burden that this placed on me and the medical trauma I experienced yet, yet again.
I can't even tell you the reproductive health care medical trauma that I've been through.
We need Margaritas to talk about that.
And I'm a woman of relative privilege.
I did live below the poverty line until I took my job at Drexel, but I was very fortunate because I went from earning under the poverty line to making enough to pay for the supports I needed.
I'm making enough to hire a housekeeper every six months to do the EF things I don't have the space for because I can't work and take care of my home at the same time.
And interestingly enough though, now the government is asking me for $15,000 back because they don't know how to count.
You know, we just cannot continue to subject autistic adults to these repeated exposures to trauma.
It is doing great harm and the trauma people don't want to work with us because we're autistic and the autistic people don't work with us because they're not trauma experts.
We need to change that because what we're really dealing with is not having autism.
We're dealing with the trauma of administrative burden.
We're dealing with the trauma of gaslighting, we're dealing with the trauma of medical mismanagement.
And so we really have to do more to prepare for the number of autistic adults who are maybe hitting their own personal wall leading to diagnosis because of menopause or because of raising children that are neurodivergent or because they're fighting with the school system.
I was unable to be employed for 35 years while my son was in public school because I couldn't fight the school system and still care for us and work.
It was impossible.
And the subjugation of women who have to leave the workforce to care for their children because of these systemic failures is an outrageous assault on our economies worldwide.
We need to do better.
We need to really, really do better at this.
We need to start with training from the very beginning.
We need to make sure everyone's aware that no matter what field they're in, they're going to be talking to autistic people, and we need to empower them to be confident and competent in those capacities.
At Drexel, one of the projects I'm on, we're training every state mental health provider in the state of New York how to have a neuro affirming a practice.
We're teaching them because guess who told us how to do that, other autistic people.
That's why community engagement in research and then policy implementation is critical mass in the world and in the US.
Thank you very much for your time.
Thank you so much, Dina.
Very candid, amazing as always.
We'll kicked out of this room in 9 minutes.
Before that happens, I'd like to thank, first of all, the interpreters and the captioners.
I'd like to thank all of the amazing panelists like we had today.
I'd also to thank the IT people, UT people, and our colleagues for helping with an initial hiccup.
You were great.
I might try to take one question, but just like I say, one, two.
Just bear in mind, we might be kicked out in a moment, but the gentleman on the left and then the person on the right, please go ahead and just indicate who would like to address your question too.
Thank you.
Okay.
Hello.
My name is Benjamin Jen and the question is to the panel as a whole.
I'm a 17-year-old student from New York and a Director of Educational Services for the youth led nonprofit, Autism Without a Voice.
Through my coworker and I's organization, I work directly with children, teens and adults and much of the discussion around autism understandably focuses on childhood and adolescence.
Yet today's discussion reminds me and reminds us that autism is a lifelong experience and that the supports available later in life are just as important.
From the youth perspective, how can young people like myself, become more involved today in creating the opportunities, support systems, and the inclusive communities that will help autistic individuals thrive not only in childhood, but throughout adulthood later in life.
Thank you.
Thank you, Benjamin.
So I'll just take the other question and then the panel.
All right.
I.
My name is Ru Omar.
I'm an Irish parliamentarian, and I'm a member of the Disability matters Committee look, I'd like to thank everyone.
I like to thank everyone for their intervention.
And it's probably an awful lot of what we've heard ourselves.
And, I have a son who's 17, who's autistic.
And the way I would see it is We know that there are issues in relation to child services, whether we're talking about the whole battle that particularly happens in Ireland as regards assessment versus therapies and generally the lack of.
But the biggest issue is when you're talking about children that are not made the reasonable accommodations that are required, when you're talking about the case whereby And I can talk in our case, we were very lucky in relation to the primary school and the secondary school.
And I might have got a better bang for buck than an awful lot of people because of being an elected rep and having a family connection with these two schools.
But I've seen many families who have come to me and whereby they didn't have these circumstances whereby they were able to deal with the situation of a meltdown in a classroom.
They were able to allow that to happen, to find strategies to deal with it.
Obviously, as Arthur Lock got older, he found his own strategies, but schools were brilliant.
Now, it's a matter of ensuring that that sort of reasonable accommodation is allowed for throughout the entire system.
And then it's ensuring it happens.
And some of that obviously is ensuring we train people, it's best practice, but it just has to become, I suppose, second nature, and there will be varying difference.
Like Turlock will be very different than an awful lot of people who have autistic.
Who have assessed to be autistic.
Obviously, a huge difference with other comorbidities, ADHD, and he's very lucky that he is verbal and he doesn't have some of the other issues of some of the families that I would have to deal with myself.
Look, I think this is absolutely vital stuff, and the big question is, it's how we ensure that we streamline the system, particularly for adults, and that we just make it second nature as much as possible.
Okay.
Thank you very much for that.
We've just been informed that we have to leave the room.
But what I suggest is this, if you'd like to speak to the panelists now, we can actually meet outside and we actually continued discussion, I know that some of you want to network further, so please let's just continue it outside.
I'm sorry about that.
Thank you, everyone.
Take care.