To Seek or Not to Seek an Adult Autism Diagnosis?

In December the Guardian website published this article about the rising number of mothers who – after having a child diagnosed with ASD – have realised they, too, are autistic and want to pursue a diagnosis.

I am not some sort of anomaly.  I’m not unique in being in this situation where I have realised as an adult that I’m on the autistic spectrum.  This is a common experience for parents (and especially mothers) of autistic children.  I’m not the only mum out there trying to weigh up the pros and cons of seeking an assessment to see if I can get an official diagnosis.

When I first realised (or, rather, when my family first told me) I’m autistic, a diagnosis seemed a bit pointless.  In all honesty, it seemed like the height of naval-gazing.  I’d got through nearly 30 years (now a little over 30 years) without a diagnosis so, really, what would it achieve?

It’s a question I’ve spent many hours pondering.  Eventually I came to the conclusion it is worthwhile pursuing an autism diagnosis as an adult.

Right now I don’t work.  Well, actually Wolf and many fellow feminists would be frustrated with me saying that.  Rather, I don’t do any paid work.  Being a stay at home parent to two young (not to mention autistic) children is work but I don’t have a boss to report to (unless you count the small tyrants who demand an endless supply of milk, Cheerios, toys and YouTube videos and who pay me in hugs and scribbly drawings).

However, one day I might return to the world of paid work and at that point a diagnosis would be a useful tool.  My employer would legally be required to make ‘reasonable adjustments’ to help me cope.  What form those adjustments might take could vary massively depending on the job and my own needs but could be things like allowing me to listen to music at my desk through headphones to drown out any other noise I might struggle with, communicating with colleagues more through email and less in person, allowing me to wear more comfortable clothing if I had sensory problems with a uniform, letting me use a fidget toy, giving me more explicit instructions than other workers so I don’t feel unsure and anxious.

Having reasonable adjustments in place can mean many people on the spectrum can manage to hold down a job when they otherwise simply couldn’t.

The are reasons for an adult diagnosis aside from employment, though.  As the article I linked to points out, many parents of autistic children run into problems with social workers because their own undiagnosed and unrecognised autism makes it hard for them to communicate with said social workers.  As a family, we don’t have any social worker involvement, but even communicating with teachers and doctors and health visitors can be tricky with autism.  Being able to explain those communication problems with the back up of a diagnosis can help or – in a worst case scenario – protect autistic parents.

In fact, dealing with all manner of people can be easier when you have an explanation from medical professionals for why you’re struggling.  You can, for instance, request a chaperone for hospital appointments when you might not be in the best position to communicate with doctors about what’s wrong or in the right frame of mind to take in anything they’re saying (bright strip lights, overpowering smells, lots of people…hospitals are not nice places for most people on the spectrum).

Keeping with the medicinal theme, many autistic people react to various treatments and drugs differently to their neurotypical counterparts.  From pain medication to therapy, autistic bodies and brains are just not wired up the same as everyone else and knowing why someone might not be responding as expected to any given treatment can be hugely helpful in finding one that will work.

And what about old age?

If I end up in a care home when I’m older, I’d like the staff to know I’m autistic.  It could be pretty important in terms of how my care is handled.  Plus, the process for being diagnosed with dementia or Alzheimer’s relies heavily on asking the individual various questions.  If that person already has communication difficulties and might – at the best of times – answer differently to most people it could very much affect the results of any assessment for these (and other) conditions.

There are lots of issues regarding aging and autism that need a lot more research and many of these are specific to women and, for instance, going through the menopause (Cos Michael is one of the few people talking about these issues and this video is a good starting place if you’re interested in finding out more).  Hopefully, these issues will be researched soon, at which point having a diagnosis would be very useful later in life.

The last reason for pursuing an assessment is less to do with practicalities and more to do with personal peace of mind.  After years of not quite fitting in, of always feeling like an outsider, of always feeling like you struggle that bit more than everyone else just to get through each day, of assuming you must be weird or lazy or simply a bad person…the relief of having a professional say it’s not your fault and there is a medically recognised reason can – I hear – be immense.

So, all in all, I would like an assessment.  I want a diagnosis.

Of course, that’s easier said than done considering when I mentioned the fact I was pretty sure I was autistic and wanted an assessment to my GP she looked at me like I had just said I seemed to have grown an extra nose on my foot and wanted her to find me a good witch doctor to treat it.

…That’s an issue for another post, though!

 

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7 Comments


  1. Oh my goodness, so much to think about, I think you are wonderful to have coped so well and learned to deal with life growing up with no diagnosis, for all the reasons you point out going forward I should take all the help going. #twinklytuesday

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  2. What a through post, you have obviously put a lot if thought and research into this, which should really help anyone in the same boat. Push for a diagnosis, hope you get the assessment #twinklytuesday

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  3. I had to smile about the old people’s home because I’ve literally JUST posted and mentioned that. I’ve just been diagnosed at the age of 46. My advice is it’s never to late to go for it and it’s helped me a lot just having validation of what I already knew.

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  4. I’m not autistic personally, but I think I would probably be inclined to go for diagnosis if I was for the reasons you list. I imagine it would be very helpful in being able to access support if you need it in many areas of life and, as you say, probably really important for ensuring that employers make any necessary adjustments. Don’t miss out on opportunities to be treated the way you should be, and to be properly supported, just because you are an adult and have coped this far, I say. #TwinklyTuesday

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  5. so much to think about, I wish you luck getting what you need to support you through the rest of your life, esp when it comes to old age and the thought of being misdiagnosed due to communication difficulties #SpectrumSunday

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  6. Well thought out. I think there’s definite benefits to it, my not really sure I see any negative points. When its a child there’s lots of worries about how it will affect them growing up, accessing education, work etc, how they feel about themselves. But you are you now.. so I think it could only help. But everyone is different, and a personal choice. Keep us posted. And thanks for linking it to #spectrumsunday

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  7. I am aware of other people’s position about a diagnosis; however, in my experience obtaining an autism diagnosis as an adult is useless and may be even harmful. To begin with, as an adult you may have learn how to deal with people. This would cause some supposed experts to mistreat thinking you are trying to fake a syndrome you genuinely struggled with all your life. Don’t think for a second autism specialists will necessarily emphasize with you. Additionally, as an autistic person you may have been bullied, making more susceptible to depression when your identity is associated with a defect. Most counselors in the United States are not trained to bring up potential issues without putting you down. In addition, don’t try to seek group therapy if you are bullied. Most people will judge you and make you feel worse, and that includes the counselors. Finally, if you still decide to get a diagnosis know that in the beginning it might relieve you, but later it will feel like a burden since there are no proven treatments for adults and you might feel helpless knowing there is not much you can do to change it. Also, don’t tell anybody, not even your spouse, mother and worse employer. Most people will think criticizing your actions will help you change when in reality excessive criticism will throw you into severe depression. Also strangers, like an employer, most likely will not sympathize with you despite knowing the diagnosis. As a matter of fact, in a legal battle they will use it against you. They may offer accommodations but simultaneous bullying is very common to force you to quit. The trauma you are left with it’s horrible. Even supposed people that are supposed to help like a doctor or social will not treat better, most of the time, because of your diagnosis. In fact, they may bully you too. I am saying all this out of experience not what I think, but what I know a diagnosis can do for you. So save yourself some pain and don’t look into it unless you see that effective treatments become available and if you do keep this information for yourself. You have a 99.5 %chances several of things will happen to you if you decide to go ahead with it. Perhaps 0.5 % of the people might treat you better. Not to mention the ignorance of your spouse when trying to deal with might cause a divorce. There is more to lose than to gain.

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