Our new report, ‘Autism and ADHD: The damaging waits for assessment’ written in collaboration with The Brain Charity and The Donaldson Trust, highlights the urgent need for change within NHS neurodiversity assessment services to support both patients and staff.
In our report, we examine the long waits for assessments, and potential contributors to the declining situation and propose ten recommendations for reform. We also look at the human impact of the crisis, and share the stories of people who have been directly affected by long waits for diagnosis and treatment.
One of our collaborators, Jane McNeice has written on the importance of timely autism diagnosis. We are pleased to share her story below.
My experience waiting for an Autism assessment, by Jane McNeice
I can’t tell you how many times people have said to me “but why does a diagnosis matter?”. Two things matter – identification of autism, and diagnosis. Like the Aintree Grand National, that journey is full of hurdles, falls, and for some, fatalities.
For a long time, I felt over-dramatic in that assertion, but not now. It’s not overdramatic, but rather the reality for so many autistic people and their families. The hurdles include:
- Identification: Finding ourselves and learning that we are Autistic is incredibly difficult. As waiting lists show, our health, social care and education systems are ill equipped to identify and diagnose us, especially if we are female, or identify as. For me this part took 44 years, and in the end, I self-identified, by chance. It had been missed by professionals who weren’t aware of the female Autistic presentation.
- Making your case for referral: Following identification, convincing the appropriate professional(s), usually a GP in the first instance, or in the case of a child – teachers and special educational needs co-ordinators, of our findings can be the next hurdle. This can take weeks, months, or even years.
- Criteria for assessment: Once you’ve successfully made your case to the first practitioner, you reach the next hurdle, which is meeting the requirements for assessment. If the person needing an assessment is a child, the parents/carers are likely to face additional barriers such as mandatory parenting courses or Early Help Referrals, which can add weeks, months, or years to the process.
- Waiting for an assessment: And, if you are finally accepted on the assessment waiting list, you’d better bring provisions, because the waiting times are unacceptably long, and you could be there for a while! This is often a postcode lottery.
- Diagnosis (or not): You think this is the end of the journey. Wrong, it is just the start of another one!
I could write at length on each part of this journey, the searching, the process following identification, and the journey post diagnosis. Within each exists a plethora of obstacles, frustration and emotional rollercoasting, battles that require energy, and the desperate fight not to break at any point. Some people never find themselves or self-identify in the first place, and their suffering simply leads to too much pain, sometimes resulting in suicide, which is much higher in autistic people than in the neurotypical population. Deaths from substance misuse, neglect, eating disorders, and other connected issues can all be illustrations of undiagnosed Autistics who lost the battle before they were found.
Currently, the picture is of a broken healthcare system for neurodivergent people both at the pre and post diagnosis stage. We are a minority-minority, or ‘double minority’, if we are not yet identified. We know we are different and never feel accepted or understood, but we don’t actually know ‘why’. Imagine not knowing the colour of your skin, or your sexual identity, but having to work that out based on how you feel and how you are treated by the world. This is the life of an undiagnosed searching autistic. This was me for 44 years till I self-identified. At the point of my diagnosis, my family were already part way through the above process with our son (again parent-identified, not professional), so I chose instead to take a private route for myself, being one of the lucky ones who had a choice. We were also lucky to overcome the delays by seeking a private assessment with our son. Sadly, this is not the case for so many, including my daughter who is still waiting on the NHS for an ADHD assessment since her private Autism diagnosis in 2021, and my grandchildren who are waiting for an NHS Autism assessment.
So why is it important that we continue to fight for our truth? Because it matters and may matter even more to those who have a need for facts – autistics. People with autism can also be incredibly determined and tenacious. If we make something our obsession (special interest/SPIN), woe betide he/she who tries to stop it. We will just fight harder. In my working life, I am a mental health trainer, which includes delivering courses on topics such as resilience. We often discuss what resilience actually is and whether we know anyone who is resilient? I actually believe the autistic community to be a good illustration of resilience. We are a group of people surviving in a world not built for us or by us. It requires elevated levels of resilience to survive in those conditions. It also requires high resilience to keep ploughing on in a system with hurdles.
That very same resilience is what helped us to survive sexual abuse (9 out of 10 of us were and have been sexually abused), bullying, and manipulation in many cases. Many Autistics have a victim narrative of some kind, and often we blame ourselves for what happened to us. I am now better able to protect myself from predators post diagnosis.
Many of us have suffered from mental illness, a very common co-existing health issue, and other health challenges linked to autism e.g. hypermobility, dental problems, gastrointestinal problems, amongst others.
Many of us will be very self-aware, but don’t really understand ‘why’. This ‘why’ is the ultimate key to our emancipation. When you self-identify and/or receive a diagnosis of autism, you will for the first time know ‘why’ all of this happened, that you were vulnerable, that you experienced the world in a different way to other people, and that the world you live in was never created with you in mind. These are just some of the reasons why life is hard for us. Finding out ‘why’ and knowing we are autistic is not just a diagnosis, it is a treatment in and of itself.
Our psychological and physical health can improve dramatically by knowing. For me this resulted in the suicidal thoughts that I had lived with for most of my life becoming far more manageable because they had now lost some of their power. My own suicide risk factor has reduced because of the knowing. I now know my identity, who I am, and why I am, and I am proud. I consider myself a survivor in a system that is not working, living in a world I am not suited to.
There are three over-arching reasons to find us that reveal themselves:
- Suicide prevention – if we know who the Autistic people are we can better protect them from suicide through acceptance and support and supporting their related health needs, mental and physical.
- Child protection and safeguarding – if we know who the Autistic children are we will know those who are doubly vulnerable to the predators of the world. We can offer additional safeguarding and help them to be more alert to predatory behaviours.
- Autism is not just a medical diagnosis; it is an identity. Our brain type defines how we view ourselves, our other identities, and everything we are exposed to. Knowing our brain type is therefore fundamental to our identity.
Getting a diagnosis is a health intervention, not just a process towards one.
Jane McNeice BA(Hons), PGCert, Assoc CIPD, CMISMA, is a Mental Health Trainer and Author at Mind Matters Training
Jane was privately diagnosed with autism after 45 years of social masking and related challenges. Jane has provided this blog to describe the challenges facing people seeking a diagnosis and to highlight the critical importance of diagnosis.
Find out more about Autism and ADHD, and the true cost of spiralling waits for assessment here: Mental Health Services | CHS Healthcare