To be relieved at an ASD diagnosis

[MrsBB1982]

Posting for traffic I guess.

There's a lot of back story but my DS has hard a hard time with school including being taken out for a while before restarting at a new school.

At his old school we were made to feel he was just plain naughty and we needed to discipline him more words like violent, unruly, disruptive, unempathetic and unkind were used...about a 4 year old. It was heartbreaking.

His new school have been great. They took us aside and suggested this was not just naughtiness but something else.

They were right. He's been diagnosed with mild Aspergers syndrome. Since the diagnosis and some measures have been put in place he's been showing himself to be the wonderful boy we know and love at school as well as at home. We've seen him laugh and joke in a way we've never seen before.

I thought I'd be so sad at the diagnosis but I feel so guilty that I'm not. I'm relirked, almost happy. Surely that's not the right response?

Well I was officially diagnosed as having Asperger's rather than ASC / ASD and that was only a couple of years ago (when in theory it was already no longer in use). Some specialists do still use it, it's not a big deal. And nor is calling it "mild" if it's helping to explain to someone new to this. The OP is right - Asperger's does sound less scary than autistic spectrum if you don't know that much about it, and particularly when it's your child being diagnosed.
And yes, you're not remotely unreasonable to be relieved. I was, that and utterly delighted at finally having a label to explain where I fitted. Knowledge is power. It's so much easier to figure out how to get through life if you can identify where you struggle and why. Best of luck to you and your Aspie

momandas you're right when you say he's not mildly affected. Life has been very stressful for him. He's distressed by crowds, new situations, peers, loud noises amongst other things. I think what they meant was these things could be helped by pretty minor changes in how we treat him at home/school. That part seems to be correct. We've changed very little at home and school have made some slightly bigger adjustments but nothing huge and that's made a massive difference to how he's behaving. Like I said before - the belly laughs we've had in the last few days are like nothing we've seen before from him....oh and the hugs...my god the hugs have been amazing

OP there's no need to apologise.

And I don't hint you're right to get to grips with his DX yourself before telling him.

As others have said, I think relief is a very common feeling. I know that's what I felt when my ds was diagnosed. I am so glad your ds is in the right school now and is being properly supported so that you and they can see the real him.

As for my ds' diagnosis, we were told he fulfilled the criteria for a diagnosis of Autism Spectrum Disorder. They then went on to explain to us that in order for us to better understand where he was on that spectrum we would probably have heard of Aspergers and previously that would most likely have been his diagnosis, but that most professionals are choosing not to use the term anymore. This was a number of years ago now. As it happens, having done my own research, I don't agree with them aligning his diagnosis to Aspergers, as it simplifies his difficulties and struggles, but then again, that's why the majority of professionals no longer use it.

I can totally understand the op not being able to remember the precise words used. The pressure and stress levels you are under in those meetings are enormous and even when you're expecting it, the enormity of what you've just been told can take you aback to the extent that you don't actually take in the rest of what they say properly. I was warned this would happen and asked if I could record the meeting, which they agreed to.

Not everyone is knowledgeable about Autism, let alone all the technical terms and even what 'Autism Spectrum Disorder' actually means. We all have to go away, take some time to let it sink in and many of us start learning from there. When I think back to the early days of assessments, etc with my ds, I was desperate to learn, but didn't know where to look for the right information and meetings with professionals don't help because they all talk jargon at you and often don't explain things properly. It takes time, you don't suddenly become an expert on Autism because a member of your family is diagnosed.

There is no consensus. There are people in this world that happily refer to themselves as Aspie and don't identify themselves as having Autism, there are others that hate the use of Aspergers and prefer Autism or ASD, others don't mind being referred to as having ASD, but hate to be referred to as Autistic. Some people object to being called disabled, some prefer to say they 'have a disability' others prefer other terms. Often a term one person is happy with, will be the very same term that another person will take huge offence at. It's an absolute minefield and as usual you can't please all of the people all of the time.

For the record. I consider myself disabled. I don't have an acquired disability, I have a condition that is systemic and adversely affects just about every area of my life. That's what makes sense to me, relating to my situation, I do not expect every person I meet or speak to to know that and do not take offence if someone uses a different term in reference to me.

Thanks for your reports - we've zapped a few posts but would like to make a plea for peace and love

We told our ds he was autistic, we said it meant that his brain worked differently to other people and it meant that he was good at some stuff that others were not good at and struggled with other stuff. I think it is also a relief for him as he knew he was different to other children. He gas accepted it and tells people he has autism

And I don't hint you're right to get to grips with his DX yourself before telling him

Sorry that should be I think you are right to get to grips .......

That'll teach me to type lying down

That's really good, MrsBB x

I think relief is something that anyone who has spent years investigating their child's issues will feel on diagnosis. I know when we finally received dd2's diagnosis I was actually elated. (She has cerebral palsy). I always laugh when I tell people, because it is so absurd in reality. What kind of person is elated that their kid has a lifelong disability? But anyone who has worried and struggled and cried and fought and lost sleep will recognize the relief.
In an interesting turn of events, I use the term 'mild' all the time to describe her cp. She eventually walked without her frame in the summer after yr r, and her speech started to be more recognizable at about the same time. I use 'mild' as an easily understood term, as when I use 'cerebral palsy' the automatic assumption is that she is in a wheelchair with complex needs. It's shorthand to avoid confusion. She still has cp. And it's a throwback to the charts where motor ability was graded on a scale (mild/ moderate etc).

Ds1 has ADD and his official dx is 'ADD with ASD traits and some social anxiety'. I know what the traits are (mostly sensory, a compunction towards literality, difficulties with empathy, a few other things) but tbh the actual dx (any dx) in and of itself tells you very little about any individual child. I don't use the term 'mild' to describe ds, because it is more useful to list the things he has difficulty with, and ASD isn't a useful primary dx unless we are, for example, discussing his food issues. That said, I wouldn't shy away from the term, I don't think. It's a normal one for me to use, with dd2. Using 'mild' doesn't mean she doesn't have cp. nor does it mean she is mildly affected. (melts down with hand dryers, toilet flushes, wind, the lights in shops etc). But it's a term that in societal use that allows people to make contextual comparisons.
Does anyone have a link as to why this term is so contentious at this point? Those of us with older children who are some years past diagnosis might find it interesting.

Cripes, we are early stages of looking into this with DS. There I was screwing up my courage to dip my toe into the SN boards, and now I'm scared to post anything for fear of not getting the terminology right.

Aw, Migs please don't be put off.

Just look at the majority of lovely people on this thread offering support and advice.

Most of us are very familiar with that feeling of stumbling in the dark and will never judge you for it. Many of us will admit that we are still stumbling ourselves.

Trust me, for every one person giving someone a hard time there will be 10 people telling them to stop being a dick.

Don't worry about using the wrong words op!
Nobody SHOULD be caring about that but be asking how you're feeling. Ignore posts about your not using the correct terminology, that isn't important.
Hope you're feeling better now you have this

Also, you will see HQ have been brilliant at deleting the unsupportive stuff on this thread. It's really heartening to see.

Thanks HQ.

OP, I didn't tell my DS until he was 10 or so. He wasn't bake to understand it before then. He's HF (as in average intelligence) but very affected by his ASD especially social communication and interaction, oh yes and repetitive behaviours and sensory needs! So I didn't think he would benefit from having it explained any younger.

I haven't kept his DX private as he is really obviously autistic within minutes of meeting him. If your DS is better at masking there may be an argument that disclosing his DX should be his choice, though I can see no benefit from withholding the information from school.

When I did explain it to him I kept it really simple, that his brain worked differently to most people, that he was very good at remembering facts etc (insert whatever is appropriate) but not so good at chatting to friends. So trying to balance advantages and disadvantages so it wasn't all negative. It's rarely all negative in truth. It can help very much if DC are upset about being different and struggling with things they see their peers having no problems with, that there's a reason for it and there are others like him etc.

Do visit the SN boards. Lots of experience and characters there. I found it very helpful at a time when things were tough.

Weird autocorrect! He wasn't able to understand, not bake! In fact he has a GCSE in Catering!

Nope not a weird response at all OP.

I felt relief when DS was diagnosed...albeit while feeling at the same time that I'd been hit by a brick.

It meant so much to know that other people could see what we did. DS is now settled in a lovely special school and being helped to achieve all the things other children take for granted.

So glad your DS is now getting that support too.

Migs please don't be scared to post in SNs. When I was desperately looking for info, trying to work out who to go to to get my son some help and then deciding whether or not to go ahead with assessment it was MNSN that kept me sane and it has continued to be a source of support and information ever since.

Please do come on over and post, you will be made very welcome and you absolutely don't need to worry about using the right terminology.

That's really interesting Ellen, DS1 is 9 and we have decided to wait until next year before we tell him the full story. He knows some things but right now we don't think he could handle it.

He tends to fixate on anything 'medical' and it can really set him back. At the start of the year, a doctor explained to him that he had anxiety and all about what that meant. DS1 ended up totally isolating himself as result (missed an entire term of school, stopped seeing friends, refused to stay with his beloved granny).

He's still not 100% even now but we are on the waiting list for a therapist who he will be able to see on a regular basis and plan to take it from there.

I will say OP, ever child is different. My advice would be to talk to the people involved in his care - get everyones opinion then decide what you think it best.

Thanks again for the support. I'm really grateful

Mistress my ds was 9 when we told him, but only because a family member let the cat out of the bag, ideally we would have waited another year.

He suffers from health anxiety and both the Ed Psych and Clinical Psych felt it was best to wait and we agreed.

To be honest, I think as his parents you will have an instinct for when it's right for him, as it will be different for every child.

It turned out that ds was fine when he was told, we read some books together and talked it through in a similar way to Ellen. It's now that he's a teenager that he's finding it harder, because he just wants to be like everyone else and while he understands and accepts that he has ASD, he gets angry at the Autism for making his life so hard.

Just realised that sounds really bad, but it isn't all doom and gloom. He's in a school where he's happy, is starting to achieve well, now that his support is right and finally has a lovely group of mates that he skypes from home, as he's not really one for going out socialising. He has a career in computers in mind and is working hard to get where he needs to be to make that happen. Generally he's a happy, cheeky fun-loving teen, he just has the odd time here and there when it all gets a bit too much.

We told very close family and his school obviously, but no-one else really. Now he's older it's up to him who he does and doesn't want to know and there is absolutely no reason he has to tell people unless he wants to or feels it might help them to understand or help him.

moosemama that's greally thanks. We aren't sure which family members to tell. We're very close to my side but not DHs. Very complicated relationship ship with his parents (by complicated I mean awful but that's a whole other thread - we might not talk for weeks at a time (. We worry they'll see him as 'broken' so not sure if we should tell them.

MrsBB come over to the SN Chat board and stick your head around the pub door.

It's a bit quiet in there tonight, but it's a good place to just offload and find the company of people who are going through or have gone through similar experiences.

As you've discovered, AIBU can be a bit of a tough crowd when it comes to certain subjects, although there are plenty of lovely posters on this thread, despite the blip earlier.

Thank you lovely posters!

OP I'm glad his new school is being so supportive - it sounds like there are so many more positives now.

You have just reminded me. We didn't actually tell my PIL's for a few years, mainly because we didn't think they would understand or be accepting, which is ironic, as it's very easy to see which side of the family it runs through. They were approached themselves and asked to consider having dh's brother assessed when he at school and FIL physically ejected the Ed Psych from his house! So, we didn't really think telling them was a good idea.

I think we eventually told them when he was going to secondary school, as it was a bit hard to explain why he wasn't going to the local school and why he had to use a laptop instead of writing, etc. We were very surprised by how well they took it and although they don't really understand what it all means, they've actually been ok. Before we told them they would criticise him for eg spilling a drink or interrupting, but they are much more tolerant and less critical of him now. Interestingly enough another 'grandchild' from one dh's siblings has also been diagnosed recently and with us having laid the ground, so-to-speak, their parents were able to tell them straight away.

I have heard the teenage years can be especially hard, moosemama but I'm glad to hear it's not all doom and gloom as you say and it's is brilliant to hear all the positive things your DS is up too.

God bless Skype - That was the only way DS would talk to anyone for a while.

It's also great to hear from people who have waited to tell. I know there is a certain amount of controversy over 'keeping' a diagnosis from a child but I guess for some children it can do more harm than good.

MrsBB you will find there are MANY of us who have had a hard time from friends and relatives over diagnoses. I personally experienced everything from anger to jealousy as weird as that sounds.

Just remember that MN is a wonderful place to vent about it, especially since they let us swear. :o

There is nothing broken about your amazing little boy, as you well know. Don't take one ounce of that shit even for a second.