Unexpected Aspergers diagnosis - husband wants to challenge

[raindropsfallingonglass]

Bear with me, I'm having a tough day. I posted on this subject about 6 months ago under a different username, and have just NC'd because I think some of my other posts were identifying and I don't want to talk about this IRL at the moment.

So, I have a 5yo DS who has just this morning received a diagnosis of Asperger's. I was not expecting it, as although he's a difficult child to parent I didn't think any of his peculiarities were bad enough to receive a diagnosis. I was probably in denial, and DH is not supportive of a diagnosis at all. I attended without DH as I wasn't expecting this.

DH would like to challenge this diagnosis, I'm not sure how/other than seeking a second opinion. I'm not sure as I don't think it's necessarily our diagnosis to challenge. Although the process does seem to be a bit odd - we saw a paediatrician once, she wrote a letter, and the panel came back with a diagnosis. I see his argument that the panel haven't ever met him and it seems unlikely that they would have had enough information from one hour session. So as not to drip feed, the referral came from speech therapy who thought that although he probably wouldn't get a diagnosis he was challenging.

DH is very angry about the whole thing and is currently taking it out on me. Saying that I have failed him in my parenting, and that I shouldn't have just accepted the diagnosis. I expect he's just angry, but I'm a little lost and upset right now. And I can't talk about this IRL, so I'm here...

Can I challenge/question this? Should I?

Anyone?

Are you in the UK OP?

Yes. Sorry, should have clarified. This is an NHS diagnosis that has been endorsed by panel

There wouldn't just have been the information from the one hour session. The SLT would also have written some sort of report for the original referral.

Maybe someone else who has had their child diagnosed recently will come along soon, as I don't know what the system is now.

When our son was diagnosed with ASD 15 years ago, we only had one appointment with a paediatrician, which was probably about an hour long.

Prior to that I saw a psychologist who filled in some sort of questionnaire.

And the original referral, like in your case, was made by the SLT who had been working with DS for some time.

In our case though we were delighted that someone had finally noticed and was doing something about the behaviours that we had been raising concerns about for years. (He was nearly 8 when he was diagnosed).I've never queried it. I know it is right.

Have you done any reading up about autism? When you say your child is difficult to parent, can you give some examples?

And why is your DH not supportive?

So there would have been slt report which was fairly non committal, and the parent questionnaire. And the assessment, and her write up of the session. Which I thought was a bit ott.

I’ve always thought he was borderline. Can be a pain about change. Doesn’t have good respect for personal space but mostly mine. Often requires me to get very angry before discipline will work. And not because I’m not trying.

DH is just very angry right now. Being very difficult and saying that I’m the problem. I don’t know if it’s shock or what but it’s not much fun

I am surprised DS received a diagnosis of Asperger Syndrome. Since the diagnostic manuals changes AS is now encompassed into ASD.

You can ask for a second opinion, but it is highly likely to be correct. They don't diagnose lightly, if HCPs are unsure they will watch and wait. With information from their own observations, the SALT, your questionnaires and did they contact school? the paediatrician didn't just diagnosis based on 1 hour. Often they will observe things you hadn't noticed or may not have realised were indicators of ASD. Have you got a follow up appointment? You can discuss your concerns then. If you haven't you can contact the paediatrician's secretary. I think your DH is in denial.

I was surprised by the aspergers diagnosis too. As was the paediatrician. They don’t appear to have done a school questionnaire, or school have no record of it. I know that it’s hard to get diagnosis and most people fight and fight for it, but I was really expecting him to be a child who didn’t meet the criteria. There are some aspects that he has particular challenges with (identifying his own feelings being one) but many of the typical signs are missing. He’s very sociable and makes friends easily. He has very good empathy at times.

I expect denial is a part of it.

Some people with Autism are empathetic and sociable. Not all fit the outdated stereotypic view.

Why did you think it was a bit OTT?

Sounds like you've got more of a problem with DH to be honest. Is he always angry and does he often blame you for things?

I thought the letter was ott because it was meant to be a summary of our conversation and I didn’t think it got my point across in the way I made it.

And you’re right, it is a DH problem. He’s not always angry. But he’s angry about this. And is currently blaming me. Which I know is unfair and irrational but it’s the situation I find myself in this evening

I know that it’s not impossible to be autistic and have good social skills, just that the diagnostic criteria cite significant difficulties. And I’m not sure he has significant difficulties. He’s a bit peculiar and awkward though. I’m not really trying to be all like ‘oh no not my child, couldn’t possibly be’ ... it just all feels like it’s been a bit too easy, and well, almost fraudulent when people struggle for so long

Why is he so angry about this? If your child is going to potentially struggle at school isn't it better to know sooner rather than later?

I think there is a difference between being sociable and having good social communication and interaction skills. Sometimes you can have significant deficits if social communication and interaction skills but be sociable because e.g. you may not be able to read situations and be overly sociable or be inappropriate. And, as I say sometimes the assessors pick up little things that you may not notice or realise are relevant.

Everyone diagnosed with autism presents differently.

the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

@Ellie56 I completely agree with you. And thanks for the comic, that’s a really helpful way of seeing it, I’ve not seen that before. There are definitely distinct areas of difficulty and other areas where no issues are apparent.

@10brokengreenbottles yes appropriateness can be a problem, mostly in terms of other people’s space (mine is the biggest issue), or sometimes I see him talking ‘at’ people. Very earnestly, but I’m not always sure how reciprocal the conversation is

I'm surprised DS was diagnosed with Asperger's as that is not in the current diagnostic manuals....autism would be the current term....
The National Autistic Society has some useful pages on their website, may be worth a look.
DH being angry and blaming you and your parenting is wholly unreasonable. Does he normally react to situations like this?
ASD is not diagnosed easily, I'd be very very surprised if a second opinion overturned the original diagnosis
Having a diagnosis can be very helpful to the person themselves in understanding themselves, finding a community of peers and accessing reasonable adjustments.
Best thing we did for our child without question

Yes I was surprised too, and actually questioned that.

I know it’s unreasonable. Inexcusable even. He’s calmed down a bit today. There is some other family stuff going on (a falling out between me and the in laws) that is adding to the tension.

I agree that a diagnosis is not usually given out lightly, but it feels like it was very easy to get. And DS although challenging does not seem to have any major issues at school. We had a rough time for a while last year but that seems to have settled.

And I agree, if he needs the diagnosis it is a very positive thing. But it was a shock and it’s a bit bewildering

He may not have any major issues now but infant education is very hands on and visual. Our son was functioning just about on a par with his peers up to about 7.

As he went further up the school and teaching became much more auditory, concepts more complex and abstract, expectations became higher and social communication more sophisticated, the gap between DS and his peers started showing and continued to widen the further he went up the school.

Yes. This worries me for my DS. Particularly secondary education - I’ve seen children (boys mainly, but also a girl I was at school with) be labelled as being badly behaved/defiant/uncontrollable and get into a spiral of discipline that has a knock on effect for the rest of their lives.

DH has mellowed a bit now. And we had a good conversation last night about how different he is from DS2, how anxious he is in general. How undesirable behaviour is almost always linked to a particular feeling (I work hard on trying to unravel the feeling as a means to resolution).

I think we will ask for reassessment, just to be sure, but I expect the result will come back the same now I’ve had a think about it. I’m not worried about him having a diagnosis, but I want to be sure it’s the correct one if I’m going to use it.

It’s further complicated because DH in particular didn’t warm to the paediatrician. She was a little scatty. And also used quite ableist language (kept describing him as ‘one of the good ones’ whatever that’s supposed to mean). I found her a little hard to communicate with as I don’t think she always got my point.

Could your husband be on the spectrum? I know all about the dangers of generalisation, but it seems to be the case that often the parent is in denial because they can't see that the child is any different from themselves.

It’s entirely possible. His job title (Professor) would put him a group likely to have more people with ASD traits than the general population.

But then maybe it’s come from me also. Although I make friendships easily, I’m not great in large all female social groups. I often offend by being direct and insensitive. I’m a bit marmite.

I think DH comes from a family where this might be seen as a weakness too. His parents were quite devastated when we talked about assessment initially. There isn’t a good appreciation of neurodiversity.

I was in a similar situation a few years ago. DH (now XH) was removed from the idea. I took DS to GP, talked to school, went to the assessment on my own. I thought he had ADHD. So much so, I told the psychiatrist I knew he'd also been put forward for ASD but he didn't have that. Two hours later, I expected ADHD. She sat me down and told me he had Aspergers/ASD... I think my jaw dropped and my tear ducts filled up and she said "He's the same lovely boy he was when you walked in here." DS continued to bounce around the room. And I said and what about ADHD and she said "That too." and she referred me for medication and gave me a stack of literature on ADHD and ASD. I went home in shock. Went up to then DH and asked him if he wanted to know the result. He didn't really want to talk about it. So I gave him a couple of weeks to get his head round the reality. And a couple of weeks later I plonked the paper work in front of him on his desk and told I wasn't going to do this alone and he ought to at least start reading. Two hours later he walked downstairs and said "I have this" to which I replied "I know." He has come to accept it, but he isn't particularly helpful in getting DH the support and education he deserves.

When will you get your diagnostic report? That will surely reveal observation and conclusions leading to the diagnosis they gave him.

My DS is now 9. WE fell out with a school we once loved because they wouldn't give him the support he needed, and I was quite vocal about explain to the school they were not doing their job. We have an EHCP and a new school now. We are happier, and DS is being well educated by a great school. I am forever grateful to the new school for rescuing his education.

I will end this with suggesting you did one thing that was critically important. You got your diagnosis early. Often people are persuaded by schools to wait. And then they find out it takes years to get an EHCP and its too late by the time they get it. Never wait around and do nothing. That is not in your son's interest.

Hey OP, how are you? I’m so glad I found your post as you could be me right now.

I have two Dds (11yo and 8yo) are bright and social - but also ‘difficult to parent’. We’ve been in regular contact with SENCO and seeing a private family therapist for the last year (suggested by school as DD2 can act up and lash out).

School have now decided it’s time to refer DD2 to a SALT and paediatrician for an ASD diagnosis. When I listened to their reasoning, I said but DD1 is the same if not worse. They said let’s refer her too then!

I was in shock, I should have expected it but it felt like a bombshell. My usually supportive DH seems angry and in denial. He didn’t come to the meeting this week. In fact he stopped coming to therapy and school meetings as he found it too upsetting and decided and ‘there was no point’. It’s very possible he is ASD too.

All this is further complicated by the therapist suggesting I have PTSD due to trauma (x2 fires and some sibling violence). So apparently my climbing the walls looking for definite answers and desperately researching ways to help both DDs is a sign of my own mental distress. What a mess!