To think my son may be autistic

[Lifethroughlenses]

My son is 10. He struggles with some sensory things such as strong smells, noises and discomfort and he is very squeamish generally (especially with food). He can’t deal with having multiple tasks to do at once and if something isn’t planned. Imaginative games have never been his thing and he only copes with creative writing at school by copying and changing stories he’s read. He finds it impossible to infer things from a comprehension but he does ok at English basically because he’s bright and can follow rules well (which seems to be the way they teach English these days) I.e. put in a metaphor, similar, use all five senses etc. He is not very organised and often forgets possessions for school. Gets very very stressed and anxious when late.

socially he’s ok with his friends at school but gets very uncomfortable if he doesn’t know people. But he is affectionate with parents, siblings and close family.

He clearly has some autistic traits that have become more apparent with age. AIBU to see someone to get a diagnosis or would you leave it on the basis that all kids have stuff they struggle with? Would it really benefit him to have that label if he was autistic? I doubt he’d get any help at school as he’s clever and can function educationally b

@Lougle That sounds incredibly difficult for your family. I hope your daughter is now in the right school and can thrive.

Having a disability isn't a bad thing. I think it's important to lose that assumption that disability = negative. There are many situations where an autistic brain can be a big advantage. Equally, there are many day to day situations where autistic people are disabled by our society, which is generally set up for neurotypicals.

Having a diagnosis also brings with it some degree of protection (ie. the disability discrimination act) that just being "the quirky one" doesn't.

I don't know any autistic adults who are upset their parents got them diagnosed but I do know many who feel very let down their parents DID NOT believe they needed a diagnosis. It helps people understand why they find things challenging that others don't. So I would absolutely say pursue the diagnosis.

And incidentally my autistic son is incredibly affectionate. He was diagnosed at 2, he has very high support needs so a different profile to your son but he loves to cuddle and press his head against mine

My son held it together until about age 10, and then things began to crumble. He knew he was different and constantly asked why nobody liked him. School was far more concerned with getting him through SATS (he barely scraped by) than complete any referral for ASD screenings. His secondary was much more on the ball and referred him immediately. Unfortunately, Covid hit that winter and things got slowed down.

FF several years later, we went private and he was diagnosed with autism, ADHD, and dyslexia. Having a diagnosis hasn't made things easier for him academically or socially, but it has opened up a wealth of support, particularly pastoral, at school.

@Lifethroughlenses thanks, fortunately I spent a decade working with children with additional needs which meant that I was aware of the potential signs and knew that starting High School and puberty sees a huge increase of outward autism symptoms as those children who managed at Primary in a structured setting can't cope so was able to prepare just incase.

I would never have referred to my Dd as disabled at Primary as she seemed like a confident, bright little girl. Now, at 13 her autism absolutely disables part of her life, in some ways she's gone backward particularly in her social skills, wanting me to talk for her in shops and restaurants where she used to happily order for herself, won't entertain entering a noisy place at all without noise cancelling head phones, having to stop sport practices as having a panic attacks due to being overwelmed at the instructions and what is required during various drills. Collapsing on the sofa at the end of the day because she's exhausted from masking all day. She didn't show any of those signs 18 months ago.

Hopefully when she comes out the other end of puberty and things calm down as they often do, she will have the coping strategies to deal with what she needs to and return more to her confident self but right now it absolutely is disabling her ability to take part in the outside world in a way you would expect a 13 year old to, but not in a way she would get any real practical or financial support.

I always feel like it's better to have the diagnosis. It helps us and the child understand who they are and how we can help them and how they can help themselves. Ds1 wasn't diagnosed until he was 14 (although he had other diagnoses by then) and it did just help us all to realise why he is the way he is and that he's not doing it to make life difficult for us. That it is actually hard for him.

@LittleBlueBrioTrain you've hit the nail on the head! Being disabled is not negative or something to be offended by.

Like those NTs who say "oh, you must have mild autism". What that actually means is THEY experience the autism mildly. The person is likely masking and letting it all out later/needing lots of recovery time afterwards.

A parent of a friend of my child decided they didn't want their child to have a label. 3 years later, the wheels are falling off big time and they're upset that the school are not supporting. This child has no diagnosis and the school have so many kids with a diagnosis, they are having to make tough decisions in the face of a limited budget and prioritise those with a diagnosis.

This child keeps telling my child that they're planning on moving to my child's new school. No chance! They won't get all of the systems in place in time. They'll have left school by then. We kicked off the assessment waiting list at age 7. It took 6 years to get where we are now and even then it's still not smooth running.

I think you should seek a diagnosis, and if your son is neurodiverse then he can hopefully get appropriate support.

Regardless of how successful, social, brilliant a person has a right to know they are on the autistic spectrum.

You will never know what internal thoughts or challenges people have. I have seen plenty of parents who didn't want a "label" and now are blindsided by behavior challenges in the teen years.

And then the teens are hit the double whammy of dealing with diagnoses the feeling of parents not being open, complicated confusion of were the parents ashamed of them- a bloody nightmare.

People have the right to learn early all of their parts to be their best self. To access their community, resources and explore all aspects of themselves.

I was late diagnosed autistic and adhd. If I'd known this about myself when I was younger I would have had a much easier time - not so much because of support/accommodations (though they would have helped!), but more because I would have understood myself.

I believed I was just spectacularly bad at coping with normal things that literally everyone experiences, and I spent way too long really beating myself up over that.
For example; I had no idea, for years, that in a group situation most other people weren't mentally juggling trying to pay attention to a conversation while consciously monitoring their tone of voice/facial expressions/body language/etc, all while being totally unable to pick a specific voice out of the background noise and having to lip read to have any chance of keeping up, while also handling a massively distracting and sometimes physically uncomfortable sensory onslaught of noises/smells/lights/physical sensations at the same time.
I genuinely thought everyone experienced the world like that, and I was just an absolute failure as a human for finding it overwhelming.

Not knowing led to a lot of self blame and low self esteem, and I've burned out many times throughout my life (this could have been avoided in some situations if I'd understood what was going on and how to manage it). Finding out was a huge relief - I'm coping much better now that I know what the deal is and what I can do about it!

If you suspect he might be autistic I'd say it would be a really good idea to find out. I know there's still this idea floating around that it's a potentially negative/limiting 'label', but it's really not - it's just a diagnosis (and he won't receive a diagnosis unless he's autistic). Assessment could potentially be very helpful, for him and for you.

These are all great points thanks everyone. It’s so useful to get perspectives from other parents. What an amazing job you are all doing for your kids. @LittleBlueBrioTrain that’s a very good point about disability. I do think of disability as a negative thing I guess (which is why I never thought of my neurodiverse colleagues as such because they are so much better than me at many aspects of our job. Also because I had a conversation with one of them recently and she was really cross at the term being applied to her). The word “disabled” literally means that you are not able to do certain things, when in fact the neurodiverse people I know can do so many things so much better. But I guess that applies to many things we would consider a disability so I absolutely see your point. Thanks for making me see it differently.

@yano that sounds exhausting. Thanks for your helpful comment.

In most primary schools in my bit of London there are about 1 in 6 children with a diagnosis and even then no two autistic children are identical. Schools absolutely should want this information as they can make appropriate adjustments, which may or may not end up as an EHCP.

The only real downsides of going for a diagnosis is the cost if you go private, being barred from a select number of employment areas (military), and moving abroad in future I believe some countries don't allow those with ASD to migrate (I think Australia and New Zealand are on the list). Other than that knowing about yourself can only be a good thing.

Alot of conditions overlap eg ASC/ADHD/dyslexia/dyspraxia. A diagnosis is helpful but it doesn’t always bring the right support unless you have an EHCP / can access specialist support. It’s worth getting on waiting list but it may be quicker to get help via an Ed psych or speech therapist doing formal testing - this can show up gaps in understanding/strengths and weaknesses. Help identify triggers and learn coping strategies. I’m a big fan of tech to help with stress and organisation there are some great apps and smartwatches that can help people with autism and adhd and even monitor when heart rate is spiking and they may need to take a break. Using reminders and scheduling apps will help at secondary. Even just knowing he can ask for help or ask for a break when feeling anxious. Cerebra charity has a free
postal library with loads of books you may find useful. Talk to current school about what you’ve noticed as often it does fall apart at secondary when the structure of being in one class with one teacher is lost.there should be a specialist hub or outreach team that can come into school and observe. If school say they don’t see issues then paying for a speech therapist to do some tests can be a way of showing up a spiky profile without spending £££ - it’s always hard for people to argue against formal objective testing.

I'm sure many of my neurotypical colleagues would say I do aspects of my job better than they do but they don't see what a fucking struggle that is in other ways.

Not thinking neurodiversity is a disability is incredibly offensive to me. Just because you only experience someone's autism mildly or as a positive thing, you assume it's not disabling for them. You're wrong.

@namechange3394 I appreciate that. As I said I can only go on my conversations with my colleague when she said it would be incredibly offensive to her TO be thought of as disabled. I have a child with suspected ASD, I do understand how difficult it can be. As I said above, I appreciate people pointing out where I’ve gone wrong. I’m learning. I think it’s important to have a dialogue about these things so that we can try and understand other people better. I can understand why you are offended but if someone is trying to understand, positive engagement and dialogue is much more helpful.

I should point out that I work in the field of mental disorder (mostly schizophrenia and older age dementia) and I have personal experience of eating disorders and depression and I have huge respect and empathy for people living with all sorts of challenges for whom daily life is a struggle. I’m new to the challenges of ASD and I’m really keen to learn more to help my son. Hopefully I will also understand my colleagues and others I know better as a result.

@JJ8765 that’s a really interesting point about tech. I guess I’m just nervous that a diagnosis only takes you a small part of the way although maybe it would enable me to access support. From what I gather though, a diagnosis is really hard to get with little to no support available (particularly for a bright child who isn’t presenting as a problem). As someone above said there are so many kids with a diagnosis already in his class that we would be way down the queue. So it will really be down to me to help him diagnosis or not. What I hadn’t factored in though is how helpful to him it would be so I will definitely do it.

Given that I still have to figure out how to help my son now, I’m going to have a look at some tech tools that might help. Thanks for the suggestion.

It may be helpful to look up neurodiversity -v- Neurodivergent.

@Lifethroughlenses in terms of getting support at school, particularly when he goes to High school you are likely to get a lot further if you approach the difficulties with solutions in mind. DD doesn't always use the adjustments I've asked to be put in place as she doesn't like 'othering' herself but knowing she has permission to do things if the environment becomes too much is valuable.

DD hates hand driers and being in the noisy toilets = toilet pass so she can access toilets when they are quieter and has permission to use the separate toilets without hand driers near the Send room.

DD finds the keyboard tapping noisy in computer science = teacher moved her to a more isolated seat and she has permission to wear Noise cancelling headphones once the instructions for the task have been given.

DD finds it difficult when they have a whole day off timetable ie sports day or with their form teacher if she doesn't already know its happening so the school ping me an email so she can be forewarned.

Parents evening was a free for all with all parents and teachers in the hall, next year I've asked to be put in one of the meeting rooms and to have the teachers come to us, it cuts our appointment time down but it's a more productive meeting.

DD finds the crowded corridors tricky but didn't want an early release pass but she could have had one.

Assessments completed in a separate quiet room with no ticking clock - her grades jumped two levels because of this adaptation.

The school put many of these in place before DD had her formal assements, and adjustments should be needs based not diagnosis based.

@Singleandproud thats really helpful, thanks. I know my son would find all of those adjustments you’ve mentioned really helpful.

@VentBox thank you. I will.

@Lifethroughlenses My brother tells me how amazing I am. How he wishes he could be as good as me at organising things. Plus, in all of my jobs, I've always had really positive appraisals. My boss continually tells me how amazing I am. They even bought me flowers once to show their appreciation of everything I do. Another team bought me a bottle of wine because I worked into the early hours to ensure a last minute deadline was met.

I never feel good. I always doubt myself. Whenever a boss wants to talk to me, I assume that it's because I've messed up.

I work remotely and never feel lonely. They asked me to come into the office once to do overtime to cover for a colleague. They saidI did an amazing job but it made me realise how stressfuI I find it having to communicate with other people in person rather than via email. Having to answer phones is scary as I don't know what they're going to say to me.

Emails are better as I can digest them in my own time. I can reread them to understand what's being said.

The worst bit was being interrupted in the middle of a task. Change freaks me out and makes me stressed out.

I had to ask on how to handle certain situations such as what to do when I'd knocked on the boss' door. Just go in, wait to be told to come in or wait for them to look up.

If you asked any of my colleagues, they would have no idea of all those emotions that I am coping with. They would just say how fantastic I am at my job. I go home and collapse in a heap and need to sleep to recover.

I thought about informing them of my diagnosis but I'm scared of how they may take it so I keep quiet. It doesn't usually have that much impact as I work from home.

It's great to have an open dialogue about these things. It helps us to all to understand each other.

@DiddlySquat52 That’s interesting. I would actually feel the same as you in every one of the situations you mention, although I suspect it’s much more extreme for you than me. I’d hope that any half decent boss would be supportive if you shared your diagnosis but of course it’s your decision and I understand why you might feel nervous about doing so. I do think that everyone is becoming more aware in general though. And that has to be a good thing for everyone.

If you have any doubts, get a referral for a diagnosis. My 21 year old son was diagnosed recently. He thought he was, and so did I, but school didn't, so we went through a lot of truancy, homeschool, panic attacks and self harm. There are other neuro issues in the mix, but an earlier diagnosis would have helped him know why he ticks the way he does.

My one bit advice - read up on how to parent autistic children and stock up on your internal store of patience. Once I accepted he probably was autistic and made room for - and anticipated - his needs/quirks, it got a lot easier, especially as he got older.

Secondary school was the final straw. Too many different teachers, too much moving around, too many classrooms and too many different kids in each lesson. He exploded rather messily in Y8.