This week, during World Autism Awareness Week, I have watched, read and participated in lots of things all about Autism.
I've read articles from adults; adults that were diagnosed later in life - part of the lost generation. I've talked with groups, at my work they have had talks and groups in from autism societies, schools and much more.
As our son was diagnosed 3 years ago now, we've learnt a lot and most of what I have seen I already knew or had read about. Even articles on the missed generation of diagnosis and how many adults are getting diagnosed now.
This brings me to say, at the beginning of this post (spoiler alert), that in this last 3 years, I have asked myself a few times now "Do I have Autism?"
One thing that did surprise me was when I was watching the Channel 4 documentary called "Are You Autistic?". The program had lots of different stories through it, one of which was around 2 people, 2 adults that suspected they had Autism. These were 2 adults that would fit into this lost generation of diagnosis.
Now that in itself didn't surprise me, it was interesting to listen to what they had to say, the tests they did and so forth. I thought a lot of what they were saying was almost the more classic indicators. BUT what did surprise me (before I go off topic again) was that they said during the program that they had created an online study/test consisting of 4 questionnaires.
They went on to say that this online test had been completed by 750,000 people. Out of the 750,000 that took the test, 87,000 people had scored pointing towards an autism diagnosis, and of those 87,000 pointing towards an autism diagnosis, 47,000 were women.
That really astounded me that, in the cross-section of people they researched 750,000 too test. 87,000 scored pointing toward a diagnosis. 47,000 were women. What also was interesting was how they talked about the gender difference in autism between men and women.
There's a gender difference in Autism? Now I had already learned a little on this. If you read back you know that we have been going through diagnosis steps with our daughter - although now they said they need to wait until she moves into secondary school.
The things I have learned is in girls, they have a great ability to mask their autism. They do an experiment in the program where they have 4 women who have been diagnosed. These 4 women do speed dating with 4 guys who do not know they have autism. They use social masking, which is what they have all learnt to do through the years, to see if any of the guys can spot their autism.
Amazingly, it seems that none of the guys picked it up. This goes to show how effective social masking is; which also show how difficult it can be to pick up autism in girls. This really backs up the process of diagnosis we've been through with our daughter and why the paediatrician has said we need to now wait until the bigger change of schools.
Coming back to the name of the program though, the thing I started to talk about before I ventured off.
So, as I was saying I've read and watched many personal stories; taken in lots of info and watched this program. For some time, the things I have learned through our journey, I have wondered if I could have autism too?
This really comes from knowing how different I was as a child and the differences I see today. Even my wife tells me that I am devoid of things such as emotion, as well as other traits that point towards autism. It really comes to light when other people say they spot differences.
For me, I've always prefered my own company a lot of the time, seeking out quiet after spells of interaction. I've never been good in teams, even though my job is working in teams. I tend to try and get separation, sitting next to people that are not on my team so I don't have to talk to them.
I really don't like too much interaction. I have a very close collection of friends, I tend to only have 1 or 2 close to me and don't need anymore.
Derealization. So, something I've often felt is a feeling I'm not in my own body and sometimes I do things to check I've done things. Derealization apparently.
Now, I'm not saying I have autism, what I am saying is that - looking at the wider diagnosis these days, I do wonder if I would be one of the lost generation or not. I would suspect that many of us would pick out autistic traits we have, we all probably have some. What it's important to do, I think, is if you feel you have a lot of these traits then maybe you should think of seeking a diagnosis.
It could be that you fall on the spectrum, maybe you don't, but trying to figure out a reason behind some of the things you may worry about doing - may help you.
Myself? I'm unsure if I will or won't. For me, I'm not worried about if I would fall inside the spectrum or not. I am who I am. Knowing, either way, would not change who I am or what I do. For some it may give an indication to why I seem to have little feeling, are more to the point - writing this, for example, is a long post as things such as my emails tend to be 1 line.
Are you autistic? Maybe you question for today?
This is a really interesting post and very surprising, especially the part about the lost generation of diagnosis! I think raising awareness is so important. #DreamTeam
Thanks. It's an interesting subject really. I remember as a child there not being much talk about Autism so it doesn't surprise me that there is a generation or two who missed being diagnosed.
This is such an interesting post. I work with children in a mainstream primary setting with 2 specific children without a diagnosis of ASD but they clearly are in the spectrum (in my mind). The school are in the process of getting those children a diagnosis but the parents are treating the situation very differently. One set of parents are pushing for a diagnosis as they feel that at aged 8, this will help their child and their teachers in the future will know and therefore can cater for their needs. The other set of parents do not want their child labelled and therefore are adamant that a diagnosis is not necessary as their child is still their child. Both these children are highly functioning and just about coping in mainstream with support. My point (and sorry if I waffled on) is that do you want to know for sure? If you do, and it would be helpful for you, then go for it. If you don’t mind, then stay as you are. In both cases you are still the same person -you are you. Good luck in what you decide.
Thank you for linking to #dreamteam this week. Hope to see you again. I really enjoyed your post.
That's a really good point. For me, I think its really important to get children diagnosed if there is a chance they could be on the spectrum as, firstly, they have so much life to live and getting help sooner will ensure they live a life with less challenge, and second, there is so much help out there to help you and them around challenges to ensure they get the most out of life. For our son, that was to go to a SEN school, but for others (such as my wife's nephew) it's about getting that one to one support if needed in mainstream.
For adults, I think it depends on the adult. For example, if the challenges I face are down to ASD (if I was one of those lost generation) then it would explain a lot - but as I have learned to mask and face most of the challenges there is nothing that I can put in place to get around them. For others though, I think it is more about knowing why they feel different, to see if it is something such as ASD or if its just because they are different. Personally, I can see both sides - partly because I know I see and feel things different - my wife (who worked with adults with Autism before we had children) certainly things I should see...
I think, I just come from an upbringing of - you just get on with it. Broke my ankle 15 years ago - didn't stop me getting on with it and going to work for example.
When all said and done though, what amazed me is how many people out of 750k (87k) the found could be missing a diagnosis. People I have met in the past say to me that Autism is more common, more diagnosed today. I just think that the number of people with ASD hasn't changed, we just spot it better now than in the past...
Fantastic post - definitely know what you mean about the lost generation #DreamTeam
The lost generation really refers to how many people, older people such as myself, may have autism, but because of how diagnosis back then was done (or not done), there are many people who do have autism who have no diagnosis. In the survey they did, there was around 87,000 people they believed could potentially have autism, out of around 750,000 I think it was. Imagine how many are missed.
Oh wow, that is a huge amount of people pointing towards being on the autistic spectrum. I wonder how many of them haven't been diagnosed. I've not watched that documentary, but I've heard before that people do tend to actually be on the spectrum in any case, just at varying levels. Really interesting read and a definite thought provoker. Thanks for joining us for the #DreamTeam