My husband thinks I'm autistic...

[Heartofstrings]

Ok I don't know if this is going to be inflammatory. It isn't meant to be.

We are going to be seeking a diagnosis of mild autism/aspergers for my eldest child. A friend asked whether I had thought about the potential genetic link and whether I thought I had it. Asked about my school experience, etc..

I brushed this off but then did one of those silly freebie online assessments. It came up as highly likely. I approached my husband and his response was "well it could make sense."

We are having a few marriage issues so I guess I'm posting for guidance on what I should do now

Glad you liked the comic strip Heartofstrings* It's a good one to share with children too, to help them understand that in a lot of ways they are just like their peers and in some other ways, they are different and that's absolutely fine.

Also, as much emphasis as you can, built up over time on why "different" does absolutely not mean "wrong" can help kids whenever they feel as though they are out of step with their peers.
Try and find a lot of examples of different things that can achieve the same results, e.g. electric cars and petrol cars can do the same thing, but they are powered completely differently. A Mac computer processes things completely differently to a Windows system, but they can achieve the same results.

I figured that because I have a job, friends, kids, the lot, it wouldnt be valid if I got a diagnosis. I dont experience the same level of challenges so it wouldn't be fair

This is meant in the nicest possible way, but you seem to have a very fixed idea of what autism is, alongside a misplaced sense of fairness in that you want to compare your challenges with what you perceive other peoples' challenges to be. Autism rarely presents on its own, so again you may be looking at other people who you believe to be autistic, yet you're actually seeing symptoms of their co-morbid conditions, not their autism.

No two autistic people have exactly the same challenges and strengths and their presentation of their autism can be completely different. I've seen posts on the SN boards from parents with 2 autistic children whose presentations are like chalk and cheese, but they are both diagnosed autistic.

What would be fair, is for you to have an assessment by medical professionals who can, via their different tests, determine whether you are autistic or not and (hopefully) provide you with a barrage of test results showing your individual pattern of strengths and challenges which will help you to appreciate why you react like you do in some situations.

Please understand that if you do not fulfil the criteria, you will not be given a diagnosis. You will only be given a diagnosis of autism IF your scores on their tests, personal observations and sometimes historic evidence provided by a family member are within the ranges for a diagnosis.

Just going for an assessment is no guarantee that you'll get a diagnosis. I'm stressing that point because so many people think that all you need to do is have an assessment and then you will automatically be diagnosed, especially if you've paid for the assessment, it really does not work that way.

The confusion comes from having an additional learning disability. Two thirds of autistic people don’t have a learning disability, one third do. Those who do, cannot hide their autism or learn other communication techniques.

I have to address this because this assumption really harms people like my children. It’s dangerous and damaging.

My twins are 3. They are diagnosed with ASD level 3. They are currently non verbal.

There is no evidence that they have learning disabilities in addition to autism. Rather, the severity of the impairments to social and communication skills make it very difficult for them to learn in the way that an NT child would. That does not mean they have learning disabilities.

Attitudes like this are why our local authority have assumed they are incapable of learning and want to put them in a school for children with profound and multiple learning disabilities despite the fact that there’s no evidence they have learning disabilities. In fact a recent assessment from a very experienced Ed psych states they do not have learning disabilities.

Sorry OP. Hope you get answers for yourself and your child.

Personally, I think you should absolutely pursue it and the fact that the impact is less severe than for others shouldn’t stop you. I do agree though that having one diagnosis for those with such a range of experiences can be a challenge and understand your concerns.

I still can't wrap my head around the idea that I am deserving of an assessment/diagnosis.

I work within education so do know about the spectrum and various presentations.

I can give many examples like the milk one. I actually take my coffee black in the mornings and with milk in the afternoons. I like both. But I am liable to have a massive issue if there isn't milk. Another example, bacon and egg sandwich. If the yolk breaks it has to go in the bin. It must be runny.

Thank you all for your support today. I really do see myself in the descriptions of young autistic girls such as observing play. The video linked above talked about fashion and makeup. I'm a Jeans and tshirt girl like he said. He also mentioned promiscuity

Coming to terms with the idea of being autistic takes time. I remember thinking I can't be autistic because I don't have sensory issues. Then one day I was browsing clothes in a shop and I realised that I was instantly dismissing items as I flicked through because of how they felt. When I got home I realised that everything in my wardrobe was soft t'shirt type cotton. I'd never noticed that I'd filtered out so much because I didn't like the feel of it.

Is that a sensory thing? I touch EVERYTHING. I know I don't like the telly on or often can't cope with music. I find the noise of my children challenging. I just can't listen to anyone if there is too much background noise

Sensory issues and clothing is common in ASD. I'm more unusual in that I like nice clothes and do care about what I wear as you will read quite a bit about ASD in females that says the opposite and they often dress 'quirky' etc and it's more for comfort than anything else. But the clothes I wear need to be tight around my waist. I cannot abide something that's loose (waistbands etc), it's just a hideous feeling. At the end of the day I have tight marks around my body where my bra was and my jeans as even though they are skinny and fit well, I still wear a belt pulled quite tightly. I can wear loose tops or dresses but not jeans/skirts/bras. If something also didn't feel 'right' as in I found it uncomfortable in some way then I'd never wear it.

I touch stuff a lot too. I'm always stroking things in shops or have to just see how something feels. I fiddle with things too like a necklace, especially when I'm feeling very uncomfortable or anxious. I think it's my 'fidget' toy like kids have cubes or spinners.

Try the AQ test and the Ritvo one. They give a good indication. The Ritvo one breaks it doesn't into areas of difficulties too. I also did the empathy quotient test 😳. I have a great deal or (too much in fact) empathy for those I care about. But if not, forget it. There is no middle ground.

Fascinating. I can't abide 3/4 length sleeves. They literally make my teeth itch. So does rubbing butter to make biscuits. Is this actually sensory?

Rubbing butter? As in with your fingers?

I absolutely cannot abide dirt etc on my hands. I wouldn't willingly put my hands into anything other than water/moisturiser etc. If I get a bit of food/sauce on my hands I have this strong reaction and need to get it off asap. I just can't stand the feeling at all. This is definitely sensory. I'd be a useless waitress as I won't touch other people's plates when they've finished eating if they've not got a clean bit at the edges for me to pick it up.

Yes with my fingers. I've trained my 2 year old to do it for me. In fact, it's making me squirm just thinking about it

I'm sure my assessor said that women on the spectrum seem to suffer more or more intensely from sensory issues than men do. But I wonder if that's partly social since women are expected to wear different kinds of clothes and makeup etc? And of course, sensory processing disorder can be a thing on its own without cormobid diagnoses.

Autism assessments tend to look at the triad of impairments, so social issues, communication issues, and behavioural issues. I was wondering if you had a history of communication problems OP?

It might be interesting to read up on ADHD too if you've tended to find social life okay. There's also the Mumsnetters with SN section you could look at where there are lots of posts about autism, adhd etc.

your child has inherited genes/traits from BOTH of you....and a person can have many autistic 'traits' without 'having enough' of them to be diagnosed...it's a spectrum.

@Oxyiz when I examine, things are not socially ok. But it feels ok to me. My husband says i repeat myself, mum says the same. I seem to cultivate friends who listen to me. I KNOW I tend to talk at people rather than with them. But people I spend time with dont seem to mind. Although i know that I have a close friend for a while and then find a new close friend. I have one that tells lots of jokes via text. It really confuses me.

I realised that from about 6am this morning I was anxious about whether husband would get up to have the kids so I could do my workout. Even though he always does.

I work really really hard to make sure I ask people questions but I do forget.

I've decided to book an assessment privately. We are a low income family so I've asked to borrow money from my brother

Well done OP for making the 1st step in getting in checked. I'm surprised though that no one else has ever said anything, and you've never has suspicions yourself? Especially given the list of things you are mentioning that you do. Sorry, but it is very odd to teach a 2yr old to do things in the kitchen you cant!

Hopefully you get some answers and will be able to understand yourself better.

No one has ever said anything. I guess maybe I mask pretty well. My husband has been funny this week - if I say anything that clearly highlights it he has flagged it to me by teasing me and saying "you must be autistic." It's nice to find the humour but it is making me step back and analyse. He is right, and it's pushed me, in a positive way to seek an assessment. I haven't told him yet though.

It still does surprise me though, for example, for you to say that's odd.

OP- Maybe you see it differently, but to me, its very odd/strange/unusual to has trained a 2yr old toddler to perform cooking duties in the kitchen because they make you squirm and your teeth itch. Not trying to offend, but I guess it just shows that we all see things differently.

Heartofstrings well done for making the decision to go for an assessment.

Please do be careful when you book because several private people including some charities offer screening tests which are not diagnostic, they are only things like the AQ online test and a few others and the only result you'll be given will be something along the lines of 'there's a strong likelihood that this person has autism'. You have already worked that out for yourself, so it wouldn't appear to benefit you.
For some people, that's enough and they are satisfied with paying for that.
BUT,
If you want a diagnosis or not and a report that says you are or are not autistic, you have to have a full Diagnostic Assessment.

Do make sure when you book that you know exactly what you'll be getting for your money.
I hope it gives you the answers you are looking for

@Elouera

Well done OP for making the 1st step in getting in checked. I'm surprised though that no one else has ever said anything, and you've never has suspicions yourself? Especially given the list of things you are mentioning that you do. Sorry, but it is very odd to teach a 2yr old to do things in the kitchen you cant!

Hopefully you get some answers and will be able to understand yourself better.

Telling someone who is potentially autistic that their behaviour is odd is very rude. I'm not easy to offend but I do get offended when my behaviour is described as odd or weird. Just because something may not be NT behaviour, doesn't mean it's odd.

@Elouera

OP- Maybe you see it differently, but to me, its very odd/strange/unusual to has trained a 2yr old toddler to perform cooking duties in the kitchen because they make you squirm and your teeth itch. Not trying to offend, but I guess it just shows that we all see things differently.

I think you are being offensive and you quite clearly have zero idea of sensory difficulties. So perhaps don't comment on them.

I was also going to advise being careful of the private assessment route. It's not always accepted as a diagnosis if it wasn't done by the NHS.

Also, no one pointed out to me that I maybe on the spectrumand I don't think anyone ever thought I was. I woukd justbe described a weird (which irritated the fuck out of me) or looked at like I had 2 heads if I said something 'off' or took something literally and didn't quite understand. Sometimes it's not until you put the pieces together yourself that you realise.

I'd also agree that just because you have ASD, it doesn't mean your husband isn't an arse.

I am 99.9% certain I am ASD, I fluctuate with how enthusiastic I am about getting an assessment. However now I work with nice people, it doesn't bother me. They have commented a bit on me being unusual but I also know I am popular to work with - whereas in my last work place I absolutely thought I was the problem but it was because I was being relentlessly bullied.

Also my DH knows I think I'm autistic and wouldn't have me any other way. He wouldn't joke about it in a way that made me uncomfortable, that would be horrid.

Sometimes it really isn't you, it's them.

It's not always accepted as a diagnosis if it wasn't done by the NHS

The ideal private dx is to have one done by someone who also works for the NHS.

There are many qualified medics who fit this criteria, but they can be hard to track down. Some accept individuals, others want a GP to refer you to them, despite you paying.

Lorna Wing Centre specialise in diagnosing women, they accept private, NHS and GP Referrals, but they are the most expensive. (They also do a screening test, so again be careful what you book)

The NAS has a list of practitioners BUT they are not accredited, i.e. anyone can be placed on their list, so just picking someone at random from their list isn't a great idea unfortunately.

Another who suspects that they are probably asd, dd1 was diagnosed at 10 and I am v like her. I struggle socially, like routine and find it difficult if things change or go wrong, have to plan things and cannot go with the flow. I can become obsessive about things and love spotting patterns in numbers and dates(cliche I know!). I've done the AQ test and scored 38 which from I can see is fairly high.

However we're not in position to pay for private assessment and it's v. difficult to get an adult referral where we are.

I'm not sure what the benefit of being diagnosed would be, op. I'm pretty certain I am on the spectrum, but the only person who ever mentioned it was a teacher when I was about 12 who gave me a book about a person with Asperger's.
It does make my job more difficult in some ways, e.g. I really can't tell if people are being rude to me. On the other hand I don't think I care as much as other people would, a lot of it just goes over my head.
I do worry about how I have raised my 2 boys, though. Both have aspie traits, but present completely differently. I worry that I have always allowed DS 2 to talk at me and not taught him to ask people questions, but I used to think I was doing the right thing trying to share in his interests. As a teenager he is struggling to maintain friendships.
It may be worth bearing in mind that your child will need more help with social skills. I did this with ds 1 who is a lot like me and needs to be told how to e.g. answer the phone and what to say in new situations, but didn't realise that DS 2 had aspie traits until I had to fill in diagnostic forms for other children.

I tend to think that everyone is different and even though I have many weaknesses I also have strengths that somewhat make up for it. Being 'mildly' autistic has held me back in my career but I can't think of any help that would have been available had I been formally diagnosed.

Just because the help may not be there doesn't mean that someone may not want or benefit from a diagnosis. I'm certainly glad I got mine.