My daughter is autistic - am I?

[LadybirdDaphne]

I know there are threads already on whether to seek an adult diagnosis, but I have no one who will listen to this in real life and would really value your thoughts.

My daughter has recently been diagnosed with ASD 1 (not sure if this terminology is used in UK - basically what would once have been called Asperger's syndrome). The more I read up on ASD, the more I feel I have many of the traits too, but my partner shuts me down whenever I try to explain this. At the school disco this evening, DD looked how I often feel - awkward, on the periphery, wanting to be part of the group but not knowing how.

My traits include:

• very socially awkward, much happier with 1 to 1 conversation than a group. Often go 'selectively mute' in a group conversation
• find it hard to pick out one voice if in a noisy room
• was very precocious in terms of vocab (DD is like this too)
• have to consciously learn and think of the rules e.g now it's my turn to ask a question in the conversation, rather than doing it automatically
• diagnoses of anxiety and depression
• in childhood, had to follow obsessive set routines, with the feeling that the house would literally catch fire if I didn't
• very interested in expanding my knowledge and love talking about random facts (particularly linguistics) but know that this isn't the basis of normal conversation; feel that most people just make small talk about their house renovations and this is unutterably tedious
• when stressed, I can suddenly explode in temper (shouting) with no warning - it's like I don't know I'm even angry until I shout. My dad used to call me 'Vesuvius'

On the other hand, I don't think I have many sensory issues, although I can't stand more than two noises at once (eg if tv is on and DD is talking and then DP starts talking, I'm pretty likely to lose my temper), and do sensory seeking/anxious things like peeling the skin on my fingers and chewing the inside of my cheek.

Do you think it's worth talking to a professional about this? Thanks for reading my long post! I'm 40 by the way.

It's worth looking up the criteria rather then common traits, I'm not 100% but I think sensory issues are (or at least were) part of the diagnostic criteria.

Thanks for your reply - looking at the diagnostic criteria in DSM V, the sensory aspect is common but not essential to a diagnosis. I seem to have many traits often seen in autistic people (but maybe would not quite fit a diagnosis), and have passed these on to DD, who also has clear sensory issues that confirm the diagnosis.

I know that the 'spectrum' idea is now seen as unhelpful by many (having read some Luke Beardon), but think I'm personally likely to be hovering about on the margins.

It may be useful to think of "the spectrum" as something you could be in, rather than on. Consider it more like a colour wheel where each colour represents a trait of some sort, rather than a straight line with "normal" at one end and "Rain Man" at the other.

The rdos.net test is a great one to illustrate this, and does far more than just spit out a number and "you're probably autistic".

As for whether you may/may not be "one of us"...the sensory issues you describe are indicative of potential autism. You may not consider yourself to have many sensory issues, but stimming and intolerance of multiple noise sources are usually in the most frequent reported sensory traits.

Another way to look at it, though, is...whether you are or are not autistic, you can still use the same coping strategies as those of us who are to try to make your life more comfortable. For example...I have an excellent set of earbud headphones with transparent noise cancelling. When I use them in the supermarket, they make the whole experience much more comfortable because they effectively condense the hundreds of sound sources (noisy humans) down into two - left and right. As a result, my brain has to work much less hard to split background noise from relevant noise (my wife talking to me), and I'm no longer too exhausted to drive by the time we leave.

I tick everything on that list you've noted, and am currently on a pathway to seeking an ASD and ADHD diagnosis.

Yesterday DH had football on his phone and on TV, then started telling me something else. I exploded and felt so bad as he looked hurt. The noise though...so much of it!

Thanks for the replies - the 'in the spectrum' thing makes sense, in that there are a range of traits that are common across the spectrum but each one is not necessarily present in all autistic people. I'll look up the rdos.net test too.

I passionately believe that when one family member is diagnosed, the rest of the family should be profiled too. I think it could make an enormous difference in supporting the parenting of ND dc and individualising supports, as well as minimising the damage to other siblings who might also have SN but sail under the radar.

I was sitting in a meeting the other day in my ds’ school, and struggling to concentrate because of the overhead fluorescent light. I’m only able to pinpoint what the issue was because of how much my awareness of my own neurodivergence has grown over the years. It seems almost funny that I thought I was NT!

But what’s not funny is how much of an impact not understanding my own profile has had on my parenting. I’ve been powering through on guilt and self loathing. Being able to view myself with compassion and identify what I need help or support with is making a huge difference to my ability to organise or ask for the accommodations I need to parent and advocate effectively

For instance making phone calls is a legitimate struggle. And while I could laugh that off on my own account, when it impacts accessing support for dc. And then shame becomes it’s own barrier. Knowing that it is a “real” difficulty, I now ask dh to do those calls or ask to be contacted via email. It’s only a very small example.

Knowing and understanding ourselves is absolutely key to realising our potential - we can see that for our dc but it’s also true of us too.

Ask your GP. You’ll be put on a waiting list for autism assessment. The waiting list is 2-5 years depending where you live.

I'm not in the UK any more - the public health system here is not as 'good' as the NHS, any assessment process would likely have to be done privately.

I see OP is not in the uk but I just wanted to point out this is not true of all areas in the uk. My health board do not refer adults for autism assessments, unless it is something picked up as a possibility because you have been referred through mental health services then it's basically tough shit. My GP wouldn't have referred me even if they did do them because he told me I couldn't possibly be autistic given I was married with children, working etc. I subsequently had a breakdown after paying for a private assessment and being diagnosed.

An autistic child almost certainly has one if not two undiagnosed parents. I have two autistic kids and I’ve been toying with the idea of getting assessed for YEARS. Recently decided to book a private assessment even though I’m weirdly terrified of the process.

Everything you’ve listed about yourself is uncannily like me.

My husband is almost certainly autistic too (his dad DEFINITELY is) but won’t entertain the idea and was extremely resistant to the idea of getting our daughter assessed/me talking about getting myself assessed. In his opinion it’s better to not have a diagnosis (because stigma) if one can successfully pass as “normal”.

I’m not sure why men are so resistant to acknowledging these things, but in my experience they are.