Ds diagnosed with autism

[Flakeymcwakey]

My gorgeous, funny, sociable, affectionate 10 yr old DS was diagnosed with autism a few weeks ago, after a referral from our family therapist (I had sought support after splitting up with his dad. Who is definitely ND himself).

The report has diagnosed him for traits which I completely recognise and accept. I was expecting it to a certain degree.

What I didnt realise is how much the whole thing would take the wind out of my sails. I just feel defeated in some way. And it doesn't help that he has a massive capacity for verbal reasoning, which has meant that he doesn't 'seem' autistic to people and I end up having to convince them it's actually a correct diagnosis. The baseline response I have had to disclosing his diagnosis goes:
Me: Ds has been diagnosed with autism
Almost everyone: What? Ds? No he isn't

Talk to me about how this will all be okay. How he's going to be fine and have lovely, fulfilling relationships which do not leave his partner feeling completely unloved and uninteresting because he finds it so hard to move himself into other people's perspectives. How this thing of endlessly explaining why he can be autistic and hold a reasonable conversation will pass.

I think its really interesting that you're worried about your son's potential partners and their feelings rather than your sons. Do you have some unresolved issues around how his dad made you feel?

As an autistic women I've found its been the other way round and its been ex-partners and their families that have been unable to move themselves into my perspective and show any empathy for my needs. It wasn't until I met my husband, who happened to be autistic, that I was accepted for who I am.

It sounds like it might be helpful for you to look up the 'double empathy problem.

DS was 9 when he got the diagnosis and although there was clearly something worth the referral and it being taken seriously, it still stunned me when he was diagnosed and so readily recognised by the professionals.

I remember driving him home having been stunned to get the diagnosis that day, and likened it to driving cars, and the difference between driving your own car that you're comfortable with and being on autopilot, then getting into a different car that feels different and everything has to be thought about. It's still driving a car, but it costs more thought and effort to get the same outcome. Generally for DS, his autism isn't an inability to do "normal" things, but the costs and effort are different. Things need to be paced differently. Some things he can excel at, and some "basic" things are very demanding.

The impact on each autistic person is different but they do overlap in the nature of their difficulties. For "high functioning" people, the challenge is that people expect a "normal" standard from them and don't see the cost of masking. In families where there is a lot of high functioning autism, it can create an invisible culture of autistic behaviour which may be helpful, but may also create odd clashes and blind spots.

It's fine to feel winded. I think I am slightly still as we got our diagnosis in Dec 2019, DS was ill weeks later and had post-viral fatigue for a couple of months and life hasn't been properly normal since to actually talk with people like his teachers since. There was relief that the difficulties we had were justified but also that concern that this is a life long thing.

I would get a second opinion.

Please see this as a huge positive - an early diagnosis will make things easier for him (but of course can’t change some of the difficulties he will face). I wasn’t diagnosed until my mid 40s amd as a consequence had horrific MH issues from late teens

As for his future relations. PLEASE do not read the utterly horrific “support threads” for those in relationship with autistic people (or Asperger’s as the thread title states). The vast majority of these posters have self diagnosed their partners as autistic and blame every single negative trait on autism. They are not representative of autistic relationships (though they do claim to be) and are only a self-selecting group of people who in my view are expressing deeply ableist views. Many of us have complained to MN that these threads are so unfair to autistic people but MNHQ consistently tell us that they are prioritising the partners’ right to complain and seek support, over preventing the perpetuation of harmful and unfair stereotypes.

Autism does not mean lack of empathy. It does not mean cold unfeeling robot. Sheldon is a terrible example but if you want to see a far far better portrayal then check out “Community” and Abed - my favourite autistic character by far. We can be deeply impacted by sad events and have extremely strong feelings it’s just we don’t always express these feelings in the way NT people do. But as the world is set up for NT people, many people just seem us to be wrong.

The biggest thing that you can do as a parent is challenge the shitty “he isn’t autistic” responses. This is their ignorance. Don’t let him feel he is always wrong. Sure we need to learn that some things are best left unsaid etc, but being autistic does not by itself make us bad, weird or dysfunctional. Understand he will probably need space at times, that peopling is completely exhausting and that he may have strong interests (please don’t use the phrase “special interests” - it’s so patronising) but these interests are an important part of de-stressing, relaxing and creating a bit of order in what can seem like a mad and illogical world.

He can be a most wonderful partner but what will help him most is you accepting him which will help him Accept himself. We just think a bit differently, we’re not freaks.

@Flakeymcwakey

I would be careful who you tell about your sons diagnosis. It really is private information. Especially as children get older I feel it's there information to share or not.

How he's going to be fine and have lovely, fulfilling relationships which do not leave his partner feeling completely unloved and uninteresting because he finds it so hard to move himself into other people's perspectives.

That's incredibly ignorant. It sounds like you need to get over your own preconceived ideas before even thinking about what others might think.

Autism does not mean lack of empathy. It does not mean cold unfeeling robot. Sheldon is a terrible example but if you want to see a far far better portrayal then check out “Community” and Abed - my favourite autistic character by far. We can be deeply impacted by sad events and have extremely strong feelings it’s just we don’t always express these feelings in the way NT people do. But as the world is set up for NT people, many people just seem us to be wrong.

Things so true.

Both of my sons are autistic and they are amongst the most empathetic people I know. Their difficulty is that sometimes they feel too much or they don't know how to process what they're feeling, they're still young and we're working on strategies for healthy ways to deal with feeling all of the feelings.

It can be an adjustment to get your head around a diagnosis but, it your own words, you recognised so many of his traits in the report. He's still the same DS he was before you got this report, nothing has changed except for the fact that you now know why he does some of the things he does. You now also have a ticket to get him whatever support he needs, it might be a battle at times to get through the gatekeeping but it does help open the doors enough to get a foot wedged in.

I would get a second opinion.

The assessment process is fairly rigorous and there is a high benchmark for clinical diagnosis, they will usually hold off on giving a diagnosis if there is any uncertainty and it is rare for the diagnosis to be incorrect.

I would be careful who you tell about your sons diagnosis. It really is private information. Especially as children get older I feel it's there information to share or not

OP, does your son know he's autistic? If not then I'd really recommend telling him. When my sons were diagnosed this was one of the first pieces of advice the clinicians gave us and they powered advice on how to do it. We've told our sons that it's up to them who they share the diagnosis with, that they don't have to share it with anyone if they don't want to. If there is a need for me to share their diagnosis with someone then I make a point of telling them who I am sharing it with (e.g., school) and why I am sharing it with them.

[quote TowandaForever]@Flakeymcwakey

I would be careful who you tell about your sons diagnosis. It really is private information. Especially as children get older I feel it's there information to share or not. [/quote]
Such a sad statement. This shows the negative views many people have of us. It is effectively saying hide it because it’s a negative thing. Yes it is personal information but it’s almost like telling someone they should hide the fact they’re gay.

Autism Is nothing to be ashamed of and the more people that understand that autistic kids/teens/adults without learning difficulties are putting in an absolutely exhausting effort at pretending to be normal the better.

My DS recieved an asd diagnosis (along with lots of other things) last month, despite it being me who has pushed for the diagnosis and none of the 7 things he was diagnosed with being a shock i still felt deflated and sad and i couldnt even tell you why I felt that way. It lasted a few weeks before i could shake it off, so my advice would be just take some time to absorb the diagnosis and try not to think ahead to far for now.

My son was diagnosed 9 years ago. I only mention it to people when it’s relevant (teachers, mainly).

My DD (11) was diagnosed 2 weeks ago, she's very high functioning and had been masking for years. Since puberty it's all come out, I bear the brunt of her behaviour when she has meltdowns.
Like you I'm a single parent who believes my ex was also autistic. Since going through the assessment he does too. I totally understand that worry. We didn't split up because of it, but his inability to notice when I was struggling or upset was a factor. He shut down emotionally when things were difficult, eventually I did too, and I needed more.
DD can be the same, she has empathy, but she just doesn't always express it in the way others expect. She spends a lot of her time masking and just wants to be alone at home, she needs it.
We are getting my DD a therapist to help her understand the diagnosis and to help her with strategies for meltdowns and communication of her feelings as she gets older. She's really struggling with self esteem and we are hoping it will help. I'm also going to try some online courses in understanding it and finding strategies that work. We've had some moments when there's been a little light at the end of the tunnel, like her telling me school was stressful because of noise, or asking me for a chew necklace as it helps. We are getting there.
I just try to remember that although she will never tell me she loves me, or express that in a hug etc, I have other people that do, and when she offers me a sweet, (she's very selfish about food, never shares) or occasionally strokes my face or something, thats her way of being loving. And when she's an adult, someone else will appreciate that about her and will recognise that too.

Youngest DS was excited to tell his bestie who is also autistic, he was thrilled that he has one more thing in common with John (not the besties real name).

I'm also going to try some online courses in understanding it and finding strategies that work

If you haven't done it already then the Cygnet course is a good starting point. I also found The Explosive Child helpful, it's not specifically aimed at parenting autistic children but it did help me reframw my expectations around emotional regulation and understand that behaviour is communication.

Oh, and I've shared it with everyone! Her best friends mum, as she spends time there and I thought it was best to mention, also her teachers, my work colleagues as they need to understand that when I'm late in and in the verge of tears it's because I've just had a morning of DD kicking, hitting and screaming at me because she doesn't want to go to school because she's had enough of masking.. or when I've not prepared or done something for work in the evening, (teacher) it's because I can't start work again until my kids are asleep and they never fucking sleep 🤔😭😂
I normalise it, as much as possible. Then she doesn't get the oh, she's rude, or shy, or 'give us a smile love' or any of that shit. Sorry, she won't, she's autistic and won't speak to adults, get used to it 😂

I bought her a couple of novels that were written from the POV of an autistic teen, they helped. I'm ordering myself some books too, and for ex DH.

@Hospedia thanks, I'll take a look. Luckily as I'm a teacher and I'm starting to do some well being/art therapy work at school, they'll pay for the courses as I can then feedback, so that's handy. Seen quite a few free ones too

Does the report say he has traits of Autism, or does it say he has a diagnosis of Autism? It's an important difference.

I really resonate with your thoughts that no one will believe you. I've recently started to realise that I might be autistic, and if i get diagnosis, i will need to share this with my employer as part of a request for part time...but I am terrified they will be incredulous. I try so hard to be normal and hold down my job that it's killing me.

@Scautish

I don't see my childrens autism as negative at all. But I do see it as their private information like any other personal information.

FWIW too, my younger DS has a verbal ability on the 95 centile but his other cognitive abilities (visual spatial awareness, fluid reasoning, working memory, and processing speed) range between 12th centile and 35th centile.

My son was diagnosed very early. I know exactly what you mean about feeling numb. There was also people who couldn't accept it and acceptance then was even less than it is now. He is in his mid twenties now. Still needs quite a bit of support but he has other diversities such as dyspraxia (major) and dyslexia. However, he drives, works full time and has just bought his own flat. We do still have to do all paperwork for him but then he comes to ours and cleans or does jobs for me. He is brilliant. It hasn't been easy but worth it.

If he's social and affectionate now then that's not likely to change. From what you've said on your post he already has more empathy than some of the PPs on this thread seem to be showing.

Firstly you're not unreasonable to feel that way - speaking for myself I suppose I was still holding out hope I'd be told my DS would grow out of his oddities. And knowing ASD is why he is that way can feel overwhelming, and scary for the future.

But like everyone else, autistic people are all different. Your DS hasn't changed, you just have a bit more understanding of what's behind some of his traits. And you have a wealth of advice out there from/about people who have similar challenges. So take a deep breath, think about what his personal challenges are and how you can use the diagnosis to help him manage those challenges. You'll both be fine!

My DS was diagnosed at age 6. For those who spent a lot of time with him some of his traits were obvious but for those whose interactions were shorter it was far from obvious. I remember having a conversation with his dentist when he was about 10, as he needed a filling. I was briefing her about his fear of needles (thanks practice nurse) and his autism and how the proposed filling might prove tricky. She couldn't believe that DS had ASD - in fact she told me he couldn't be autistic! She was a lovely lady and actually managed to do the filling without any drama - DS opted for no injection.

DS is now 25. Has lived away from home for uni for a total of 5 years without any additional support. He's back home now looking for a job in his chosen career but in the meantime works in a supermarket (having previously held down pt jobs in a High Street store and a large warehouse in the holidays.

DP is autistic (with other conditions) and a great masker, but his true self comes out with me. We are happy together and love cuddling lots ;) He is the only person who knows my true self and I can tell him anything.
I have ADHD, a lot of my circle are ND and looking back I always seemed to date autistic men as I understood them. However some I don't think will be capable of being in a relationship except with a very specific type of person.
Being unable to understand other people's perspective is not just about NT vs ND.
There's a guy in DP's (90% autistic) video group that nobody wants to play with because he wants things his way and ruins the game (e.g. shooting his own team) when he doesn't get it.

It's very hard to comment on how your son's life will turn out as each autistic person is different but some things you can work on, some things you have to accept. Don't judge what he can do by NT standards. Just focus on him being able to live a life that suits him and his abilities.

Also to add the majority of people don't need to know that DP is autistic. He doesn't need any accommodation etc.
It's more of things like his family saying 'why don't you do X, or Y', well no we don't want to run around seeing half the town it costs us a lot. We are lucky that we hyperfocus in what we are good at and it earns it good money but when we get help in for other things people don't understand that. It's none of their business anyway!