What Does An Autism Diagnosis Tell You?

On the left is a woman with her head in her hands looking frustrated and defeated and on the right it says 'Autism' in colourful letters as a backronym saying 'Always', 'Unique', 'Totally', 'Intelligent', 'Sometimes', 'Mysterious'.

What does an autism diagnosis tell you?

You have waited months or years for a diagnosis of autism for yourself or your child. Now you have it, how do you feel?

Do you feel relieved because there is finally a concrete reason for why you and/or your child have been struggling? But what next? Most people feel somewhat let down because there is very little follow up. In fact, you are lucky if there is any follow up at all. You may be guided to read a particular book or visit a website but how do you know what to look for when you don’t really understand anything much about Autism and the root of the issues.

A diagnosis now opens up so many more questions, what kind of support is needed at home, at school? What kind of school is the right one for my child? What kind of career path can I pursue? The list is endless.

A diagnosis tells you very little but means that you are now entitled to more help for you or your child. A diagnosis is crucial for getting that support, particularly in school where previously they have not acknowledged that your child has the difficulties that you see at home.

So what is the purpose of getting a diagnosis?

For children it is so that they can access support at school. A diagnosis can help open the door to a possible EHCP (Education Health Care Plan). Although you do not actually need a diagnosis to apply for an EHCP it certainly does help. This then leads to things like requesting additional help and securing funding for naming a particular special needs school (or even a local private school with small classes) or asking for access to a teaching assistant within a mainstream school. But note a diagnosis does not guarantee an EHCP and a parent is likely to find themselves in a major battle with their local council (and sometimes the school) to get one. It is especially difficult if your child is doing ok academically and meeting expected targets. There has to be clear evidence from the parent and school in the application that the SEN support in school is not enough to meet your child’s needs.

On occasions, it is easier to get a diagnosis and an EHCP if your child is being disruptive and/or struggling to meet expected targets. We agree it shouldn’t be this way.

Adults often seek an autism diagnosis because of difficulties at work or because one (or more) of their children have been diagnosed and they recognise similarities in themselves. Sometimes a diagnosis leads to a period of mourning or depression because of thoughts of what might have been different if a diagnosis had been given much sooner. For others, it is a relief and, in some ways, a new beginning. Finally, they have an understanding of why they appear different to their peers and can start to move forwards.

But now you have this diagnosis what next? What does it actually tell you. Look on the internet and you will find lots of articles about autism being a superpower. But what if you don’t feel that you have a superpower? Or what if you feel you do have a superpower, but also feel that there are major difficulties that you really could do with some help understanding more about?

Actually, a diagnosis does not tell you very much

A diagnosis following an autism assessment essentially says that the doctor, or a team of medical professionals have been persuaded that you or your child ticks enough boxes in the diagnostic criteria to warrant a diagnosis.

A diagnosis provides no information about:

  • how to create better strategies to make your life easier at home, at school, or at work. Though you might be told to stop ‘pretending to be normal’, especially if you are a woman.
  • what is actually causing the difficulties for which a diagnosis was sought (there are myriads of different way of being autistic)
  • you may get some ideas of what reasonable adjustments to ask for at school or work, but these are likely to be generic and may not be appropriate for your or your child’s specific autism. An autism diagnosis places you into a very broad category. A category that is so broad that a diagnosis does not tell you very much.

What information is on the internet?

On the internet, you will find all kinds of information about autism:

  • Sensory Issues
  • The idea that autistic people have a kind of tunnel focus which makes it difficult to switch focus whereas the rest of the world has ‘diffuse focus’.
  • Processing issues,
  • The idea that autistic people have superpowers of some sort that should make them attractive to employees.
  • The idea that autism is an ‘identity’
  • The idea that an autistic person is not disabled by autism but by society because society does not accommodate.
  • The idea of masking to hide autism and the idea that autistic people have to think consciously about social interaction with others because it is not second nature as for other people.
  • The idea that autism is not a disability but that it is a higher evolved state that non autistic people just don’t understand
  • The idea that everybody’s autism is different, and that autism is a very heterogeneous condition Some of what is on the internet (including some of the above) is not true or only half true, but there is also a lot of useful information because some autistic people have very good insight into their particular autistic difficulties. Unfortunately, some of these then think that their autism is typical, and all autistic people are like them. But this is not true.

In addition, is now a wide range of autobiographies written by autistic people, some of which are very insightful. You may not identify with all of them, but you may well identify with some of the autistic traits in some of them. Some will be closer to the autism of you or your child than others.

Everyone has to sift their way through this information and try to work out what applies to them and what does not apply to them. This is where Aspiedent CIC can help, especially if you don’t have time to work all this out or are getting confused.

Aspiedent can Help

We have a service that helps gets to the root of the issues around Autism with suggested interventions of what may help in school and at home. This is an ​autism-profile or a ​workplace assessment. Sample autism profiles can be found on our website Autism Profiles are potentially life changing​​ for the better because they help the both the person and those around them to understand their individual autistic difficulties.

For further information on how an autism profile can help your child, check out these two blog posts about a girl and a boy​​​​, from the perspective of their mothers.

If you are interested in having an autism profile or a workplace assessment, please do get in touch.