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.

Wow, thank you everyone, there have been so many responses that have really helped me pin certain things down.

@HMG107 you are right, I have concerns related to my own experiences with my DS' dad, my exDP. I appreciate you pointing out that I am showing here more concerns about the people around DS, including myself, more than I am about DS. And really, at the base of it, this isn't happening to me, really. It's happening to DS.

I do actually think that I have been able to be and move empathetically in response to DS. For example, since he was a tiny boy, I have seen his need to 'discharge' through repetitive movements, and was proactive in suggesting it to him when he felt overwhelmed. He now is able to see himself becoming overwhelmed, at which point he will say he needs some 'private time' and take himself off into his room (or somewhere private/ remote) to have a bit of a flap about. And I have always been able to see when he has run into trouble around having a compulsion to explore something in a tactile manner (for example by hitting or pushing it) when others have seen destruction or lack of care. I have been a good advocate for him and so far he hasn't actually experienced any negativity for his difficulties, although I have at times been in conflict with other caregivers when they have expected him to behave or believed he should be disciplined or punished for something which I can SEE is not about a lack of care or concern, or a desire for destruction or aggression. I therefore don't thiink I'm being completely unfair to exDP because in fact I really did love and appreciate his ND, and loved him for, not despite it. However, I did not find him able to reciprocate in that he could not love and appreciate who I am and he was constantly trying to get me to be and see things differently. I did not feel 'seen' by him although I really did feel that is exactly what I offered him. HOWEVER, as you point out this is all about me and exDP - it's not about DS and DS is not his dad.

@BogRollBOGOF

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.

This rings sooooooo true. Indeed, when the referral and assessment process kicked off, it made me really look again at my own family, all my previous relationships, all my close friendships. We have made quite a lot of adjustments around DS without them feeling outrageous but to people outside they have looked outrageous. He still likes to have an adult to sleep with him. He needs a lot of touch to calm down at night. As I said above, he gets 'private time'. I have always done a lot of narrating transitions/ expectations/ preparation about new situations - because that's the kind of parenting he seemed to need AND the kind thing I feel I can do as a parent. The biggest adjustment we made is that we never sent him to school - he didn't look ready in terms of the kinds of behavioural expectations (still, calm, not being talked directly and personally through details of what is happening, for example). Our Consultant Paediatrician stated that with his cognitive profile, Home Ed is the best possible learning environment for him, so I feel really affirmed here. And it is a good example of how maybe just as a family we are already possibly ourselves ND and have automatically made adjustments which are beneficial but also speak to some blind spots.

So he has been scafolded a lot by me/ the family in ways that seemed straightforward to us but may look odd/ indulgent from the outside. As @TractorAndHeadphones observed there is a lot of ND in her close circle - when I think about it, it's pretty much the one thing all my close circle have in common. All of my exes are ND. My besties all have been And when I started talking to my family, it turned out my older brother was diagnosed a few years ago, and we had a lot of conversations about traits in the family around us. I had no idea before, or, I hadn't seen it before because it's just really normal for us. It might also be me as well in certain ways.

Wow OP. You sound absolutely amazing as a parent to him, you have already done so much instinctively. Your lucky DS. Best of luck with all.

I work with autistic teens and adults and they’re just bloody brilliant - and every bit as different between individuals as NTs are. If you’ve met one autistic person, you’ve met one autistic person. You’re doing great, your response above was brilliant in terms of how you’ve taken on board things that were said here. Your son will be much better off than a lot of the adults I see whose parents lived their lives in utter denial that anything was different. Family being affirming of his neurodivergence and you giving him the ability to self advocate more as he grows up will stand him in such good stead.

@Scautish
Autism does not mean lack of empathy. It does not mean cold unfeeling robot.

I completely see this is true from my own DS. He is caring, kind, concerned about all the creatures of the earth, really. Sometimes he may need talking through where someone else's feelings are coming from but he never stuggles to imagine/ empathise what the experience of the feelings is

@BogRollBOGOF

The car analogy is such a useful way to think about it>

For those asking, the diagnosis was 'autism' rather than 'having autistic traits'. It took a lot of time and the report is really thorough - the observations it is based on are accurate.

And thanks @Hospedia that is all really familiar and helpful. My DS cognitive profile is almost exactly the same, funnily enough. I will check out your recommendations. I have also ordered a copy of 'All About Me' which is about discussing the diagnosis with your child on the recommendation of the family service. I do plan to be 100% open with it and encourage him to be because I don't think it's anything to be ashamed of. I am not convinced there is a category of 'private' which doesn't either equate to 'shame' or 'vulnerability' which I don't see this as and I don't want DS to see it as. But, we haven't told him yet because I am not sure about how to put the information in front of him yet.

And exactly exactly @tobypercy - the deflation is around me sort of thinking his oddities were developmental, and he'd grow out of them. He expereinced language loss at around 17mo which persisted until he was nearly 3. And then his language was fine, better than fine. And I just though all of the stuff was the same - he'd suddenly grow out of it. But as he gets older some of it just feels more and more incongruent - like his wont to lurch off into some lengthy lecture, way past the point he has anyone's interest. To a degree all tiny children are a bit unaware of how others might not be interested in trains or whatever. But as he gets older, it looks more and more like him being odd rather than charmingly, childishly unaware that the whole world is not in awe of the Mallard. I suppose I thought he'd grow out of it. I suppose I thought I would help him to. But this is beyond even the most enlightened, sensitve parenting

I am a 29 year old autistic woman, who loves talking and has a huge vocabulary who no one would guess is autistic, to the point my own family don’t believe me!

I have a successful career in banking, a job I love with a passion, colleagues that I get on really well with and all know I am autistic and understand it! I have reasonable adjustments in place that help me work full time and to the required standard.

I have a neurotypical fiance and we have a happy relationship full of laughter and a house and a cat. I have friends and good relationships with family.

I didn’t have any of these things before I was diagnosed. The diagnosis was a tool that allowed me to understand life and change it to ways that suited me and my autism.

Ahh thanks for the supportive comments @HeyGirlHeyBoy

And very good to hear you doing so well @user1471548941 I like the idea that the diagonosis is a tool. I thought of it as a sort of armor for those conversations with people sure he's being naughty, stubborn, controlling, or spoiled. But a tool has more uses!

He is actually completely fine already and this hasn't changed it. PP are right - I just need some processing time. And when I really, really listen to myself/ my concerns, they are all related to my expectations/ ideas about who he is/ what his life could or should be. They aren't actually related to how he is doing. Because he is doing fine. And now we have another tool to support him when he is challenged. It is a good outcome, I know. I just sort of assumed I would be completely fine with it and it has surprised me to see actually I did have some ideas about what he 'should' have or be or become, even though I don't think parental expectations are a very helpful thing. But when I put them aside he's still gorgeous, affectionate, sociable. He's also great with 'rules' - you can give him instructions on how to handle situations that he struggles with and he really takes them on board. So I'm sure he'll be able to manage himself around situations where he wouldn't necessarily intuit what to do for himself.

I'm just rambling now but anyway thanks all

You sound a fabulous parent and so in tune with your son that he will grow up secure in himself, which is the best gift.
FWIT my son is now 24.. autistic, with some learning disability, and as kind, and gentle a man as you could ever meet.
My son is highly unlikely to have a partner, marry, or leave home, unless we can somehow get supported living. He can't drive, travel independently (except one bus that we trained him on) he hasn't any GCSES.
On paper that sounds pretty sad doesn't it? But what he IS, is a happy, fairly confident young man, who has held a local job since he was 19, has a couple of friends from his old special school, a dog that adores him. He's never going to be a dad, but he's now an adoring uncle to a baby who lights up when he sees him. He's probably the most popular employee our local Asda have ever had if a local group facebook post is anything to go by.
He has his obsessions, is repetitive as hell, still can't shave himself or make a meal, but his life is GOOD. He is loved, loving, has family who understand him and he knows that his autism makes him different but not less...
And his incredible almost savant level memory makes him fantastic at quizzes and we love it
We told our son as soon as we felt he could understand in some way, and I'm glad we did. He is happy to tell people he has autism ( they guess fairly quickly to be fair)
Be kind to yourself, and, be firm to those who question the diagnosis.

As a mainstream Senco and a special school teacher I've worked with a lot of amazing autistic children. My experience in the field of autism (I did an MA in SEND and autism) meant that I was able to spot the traits in my own son from about the age of three. We didn't get him diagnosed until he was in secondary school, the teachers needed the label to know how to work with him when he struggling to cope with change. Like your son, mine is fantastic verbally (if he'd been diagnosed younger we would have had an Aspergers diagnosis) and most of our friends (and family) didn't understand how he could be autistic. His teachers all got it though, as soon as we said, he's autistic they all said "That makes sense now!" The diagnosis was also great for my son, when he was younger he used to say that his brain worked differently from everyone else. His diagnosis helped him to make sense of himself.
He's 15 now, and is turning into an amazing young man. He has a fantastic set of friends, is excelling academically, he's interested and engaged with the world and has bucket loads of empathy (too much sometimes- he had trouble regulating when he was younger). I don't have any real concerns over his future, he's a great cook, he can clean when he has to and is learning strategies to help him deal with the unexpected. He has formed some great friendships and is able to chat away to most people.
I'm sure that your son will be just as great. We think of autism as a gift - it's his superpower and it makes him special in the best possible way.
Having said all that, I realise that not everyone with autism is the same, some will struggle more than others, but I have also worked with some fantastic autistic children who've been excluded from several schools and with understanding and patience from teachers and fantastic TAs they have achieved much more (in mainstream education) than their parents expected. So for some autism really can be a superpower.

I don’t see my autism as a negative and I don’t see my child’s autism as a negative either. Honestly, a diagnosis is simply a huge relief. It’s an acknowledgment that a person’s brain works a bit differently than an average individual.

For some people, autism also comes with other problems or the person has such severe sensory overload that they simply can’t function. They need very different intervention and understanding than someone like me or my child.

I have a wonderful life with a husband and an incredibly successful career both in personal and financial measures. Many people with autism actually do very well in life in terms of financial success. We find partners quite easily once we get to adulthood and start grouping with people with similar academic and career interests. There are plenty of people in the world that are excellent matches for us.

I’m too old to have gotten any childhood intervention and I came out just fine in the end. It would have been easier to have understanding parents and teachers and to have known why I was so different, but I’m very happy with who I am today.

All you need to do is provide your son with a loving, supportive environment that accepts the way his brain works. Don’t get mad when he doesn’t act just like other kids. If he needs help with certain things, help him by giving him the scaffolding to get better. If he finds others easy, let him soar. It’s all about adapting to what he needs.

Recent diagnosis for my 12 year old here too OP. When the process started (he was 10) so many people were disbelieving that he could be autistic, bright, articulate and sensory issues and stimming not immediately obvious. As he has aged the discrepancies with his peers have become more obvious. I've had to get over myself a lot, he is fairly happy. I have to let go my grief that he might not have a life like mine and enjoy the same things that I enjoy, but he is happy. Secondary school has been good for him (I was terrified about him going). I've found videos of autistic adults speaking about their own lives and experiences incredibly reassuring and informative. I think much of the problem comes from the negativity and bleak outlooks when you Google or the info you're given by professionals. I understand how you are feeling but I think that time is really what you need. Everything will be ok.