Published on 12, July, 2020
When we think of organizations that champion the rights of people with autism and their families, we expect them to be beacons of hope, driving meaningful change, advocating for policy improvements, and making life better for those they claim to represent. But when we take a closer look at the work—or lack thereof—of groups like the National Autism Society and similar organizations in the UK, a troubling question arises: Are they really doing enough?
It’s easy to assume that organizations like these are tirelessly fighting for the rights of people with autism and their families. After all, they receive substantial funding from donations, grants, and government sources. But where is that money going? And more importantly, what tangible impact are they making? Are they truly using these resources to improve lives, or are they simply going through the motions without delivering on their promises?
One of the most frustrating aspects of the National Autism Society and similar organizations is the sheer amount of money they receive without much to show for it. These organizations often get millions of pounds in donations, government grants, and other forms of financial support. Yet, despite these significant sums, many families affected by autism report feeling abandoned, unsupported, and unheard.
If these organizations are so well-funded, why do so many people with autism and their families still struggle to access basic services and support? Why do they face such immense challenges in getting educational accommodations, healthcare, and social services that meet their needs? It begs the question: What is this money actually being used for, and why aren't we seeing more significant, on-the-ground improvements in the lives of people with autism?
A common complaint from those who seek help from these organizations is that they seem to operate mainly as signposting services. Rather than providing direct support or assistance, they often redirect people to other resources or agencies—leaving many feeling lost in a maze of bureaucracy. For families who are already overwhelmed and looking for real, tangible help, this signposting approach feels like a cop-out rather than a meaningful service.
Direct support services are desperately needed, yet these organizations seem content to pass the buck to others rather than take responsibility for providing real help themselves. People reach out to the National Autism Society and similar groups hoping for genuine assistance, only to be met with a list of other places to call. This is not what effective advocacy looks like; it's a system designed to look busy while doing as little as possible.
One of the most critical issues that autistic individuals face is the lack of access to appropriate therapies and treatments. Whether it’s speech and language therapy, occupational therapy, cognitive behavioral therapy (CBT), or other essential interventions, too many people with autism struggle to get the support they need. Despite the growing awareness of how crucial these therapies are to improving the quality of life for those on the autism spectrum, access remains a significant problem.
Often, long waiting lists, high costs, and bureaucratic red tape prevent people with autism from receiving timely and adequate care. Even when these therapies are recommended, the funding to support them is either insufficient or non-existent. Higher-functioning individuals are especially overlooked, as they are frequently deemed "not severe enough" to qualify for many programs, despite their clear need for support in coping with daily life challenges.
This gap in service provision is a glaring failure of both the system and the organizations that should be advocating for better access. Where are the National Autism Society and similar organizations when it comes to demanding that therapies and treatments become more accessible and affordable? Why aren't they lobbying for increased funding to make sure that no one is left without the critical support they need to thrive? Their silence on this issue is as loud as their inaction.
Another issue is the lack of support for higher-ability individuals on the autism spectrum. These individuals often face unique challenges—such as difficulties in social interactions, managing sensory overload, or dealing with mental health issues—yet they frequently fall through the cracks when it comes to getting help. Many of these organizations seem to focus almost exclusively on those with more severe disabilities, neglecting the needs of people who may not require round-the-clock care but still struggle in many aspects of their daily lives.
For high-functioning autistic people, the lack of targeted services and support is a glaring omission. These individuals may not be eligible for certain benefits or specialized services but still need assistance with job placements, social integration, or coping with mental health challenges like anxiety and depression. Yet, the very organizations that should be advocating for them are nowhere to be found.
True advocacy organizations don’t just sit quietly on the sidelines; they actively campaign for change. They raise their voices against injustices and demand that policymakers listen and act. Sadly, this doesn’t seem to be the case with the National Autism Society and similar groups. Where are the campaigns challenging harmful government policies or cuts to essential services that impact the autistic community? Where are the protests, the marches, or the public outcry against decisions that negatively affect the lives of people with autism?
When was the last time we saw these organizations leading a protest or rallying against austerity measures that disproportionately impact vulnerable groups, including those with autism? It seems that they’re more comfortable with issuing bland statements or hosting charity events rather than taking a strong stand against the systems that perpetuate inequality and injustice.
One glaring area where these organizations have failed to step up is in holding the Department for Work and Pensions (DWP) accountable for its treatment of autistic people. The DWP has been widely criticized for its unfair practices, particularly in how it assesses and supports people with disabilities, including autism. Autistic individuals often face immense difficulties navigating the benefits system, which is notorious for being complicated, unsupportive, and downright hostile.
The DWP's practices have led to countless cases where people with autism are denied the support they desperately need or are subjected to dehumanizing assessments that ignore the realities of living with autism. Where is the outrage from these organizations? Why aren't they challenging these systemic issues more forcefully, highlighting the injustice faced by people with autism, and demanding an overhaul of this deeply flawed system?
Another troubling issue is the UK government's latest plans to spy on our bank accounts in the name of cracking down on fraud and tax evasion. These new surveillance measures threaten to invade the privacy of every citizen, including those with autism, who already face a lack of trust and respect from various institutions. The government’s plan to monitor our financial activities could lead to even greater scrutiny and harassment of people on disability benefits, many of whom are already unfairly targeted.
It’s deeply concerning that organizations like the National Autism Society and their counterparts have been so quiet about these privacy violations. For people with autism, who may rely on benefits to live and already face stigma and discrimination, this kind of invasive monitoring could lead to further marginalization. We need these organizations to stand up against these draconian measures, protecting the rights and privacy of those they claim to serve.
The harsh reality is that some organizations become so comfortable in their roles that they stop pushing for progress. They get caught in a cycle of self-preservation, where maintaining their funding and status becomes more important than fulfilling their mission. For the National Autism Society and others, it seems they have fallen into this trap. Instead of being a powerful voice for those who cannot always advocate for themselves, they have become part of the system that keeps things as they are.
We need organizations that are willing to speak truth to power, that aren't afraid to ruffle feathers, and that will fight tooth and nail for every gain—no matter how small—for the autistic community. What we don't need are organizations that talk a good game but rarely show up when it really matters.
If the National Autism Society and similar groups genuinely want to make a difference, they need to start holding themselves accountable. It’s not enough to just exist; they need to prove that they’re actually making a tangible impact. They need to be transparent about how they’re spending their funds and provide clear evidence that these resources are being used to improve the lives of those with autism.
They must also step up their advocacy efforts, challenge harmful policies, and stand up against decisions that threaten the well-being of people with autism. It’s time for these organizations to move beyond safe, comfortable territory and become the fierce advocates they were meant to be.
I believe it’s good to be critical of everything. We shouldn’t stop fighting for a better future, just because our current situation is better than it was in the past. We shouldn’t sit down and accept what we’re given.