AIBU not to pursue autism assessment for child coping well at school

@MyKindHiker not necessarily. My son’s diagnosis took three years, my daughter has been told she will be on the waiting list a similar length of time before she gets seen.

This! A diagnosis has made little difference to us in some ways in terms of practical support but I can see things becoming more and more challenging at school as DC gets older and so I am glad we have diagnosis so if things suddenly got bad then we wouldn't be waiting years

We suspected autism from about 9 months. The diagnosis was in no way a surprise to us. Her father and I are both ND.

Once we were in crisis we had to wait for the assessment. Then we had to wait for therapy intake. We had to wait for the formal school meeting. Having the diagnosis in place would have meant those relationships with providers and the school would be established. We might still need to wait to start a round of therapies, but not to do a full intake. We wouldn’t need a full school meeting, I could just call or email our point of contact and let them know an issue has popped up.

The only thing that would not have been sped up was getting in to see the leading child psychiatrist in the region, because by the time we reached a crisis, we did need that kind of intervention. That was not something we could have predicted. It might be something we could have avoided though if we had been able to act quickly when things started to go badly.

We have a diagnosed autistic son, he is extremely high functioning, but it was obvious when he was younger. He had a speech delay, didn't babble at all, was very active, and suddenly taught himself to read as a toddler. He weirdly has no sensory side issues. He got early intervention and is now thriving. Our DD was born during covid, our first child so we were fairly clueless. Didn't see that she has a ton of sensory issues involving clothes, textures etc. She would bite and hit as a toddler, which again links back to sensory. We thought all of this was normal until we had our son and saw him put on clothes without fighting us like a ferral cat. She is nearly 7, and the sens. issues are largely under control. I swear she has ADHD, she can't focus, can't remember things, takes 5 times of saying her name to get her to do things, can't follow multi step instructions etc. Outside of that though she is a delight, and it isn't really impacting her day to day at school. When she comes home from school she sometimes really melts down, so I suspect masking. We're working on transitions at home. I'm waiting for the school to tell me she needs assessed to do it, but if/when that day comes I won't be surprised. My DH is definitely on the spectrum, he is the same as my son and after learning how to have normal social interactions has friends and a great job. He didn't have any assistance or diagnosis. I think I have audhd but again in no rush to get diagnosed/no real want to. I have a very high up role in a company, have done very well, will procrastinate forever, have hyperfocus when I need though, and even as a child see the world in black and white vs shades of grey. I know my mind reverts to "right and wrong", as a young child my parents once took me to a psychologist though I never heard any more about it and now I really wonder. Even if I were though, it hasn't negatively impacted my life (fortunately).

I think for me if the school were telling me, I would take that as a sign and follow their lead.

Impairments don't necessarily show up as severe struggles. It's like being short-sighted - if you always sit right at the front of the class then you're not going to struggle so much.

The OP's school have already noticed that her DD has issues. They're the ones proposing an IEP to support her social skills. So they are already making some adjustments to try to help her and avoid her having to struggle, a bit like letting a child who can't see very well sit at the front until the optician can check her sight properly.

Can I ask a question that is probably daft?
the OP is being told to try to get a diagnosis for her DD but as far as I understand it the diagnosis is given on the basis of impairment, is that right? So to what extent would it be possible to get one if the child is not really struggling at this point but could be in the future?
Asking because I am in a similar situation and have always felt it would be pointless trying to seek a diagnosis because the school wouldn’t support

My DD is now diagnosed with ASD. In her school years she veered between being fine/mild support to struggling. She had a total breakdown in her mid teens after the Covid lockdowns. She was officially diagnosed several years after that. I don’t know if an earlier diagnosis would have helped in any way but in your shoes @IsaTheIguana I would accept the diagnosis. Good luck

Thank you!

I said if someone requires additional intervention then that is implying they struggle with it no?

I'm not the person you responded to but I hope you don't mind me answering from my perspective because this is a good question that gets asked a lot.

Firstly, masking itself is often what causes burnout. I think the word masking has started to have a bad rep because to an extent everyone masks. Nobody acts the same around their boss at work as they do their husband at home, and I think everyone would agree that's not a bad thing. Being able to adapt your behaviour to different situations is good.

For me, masking in an autistic context is way beyond this. Ever since I was little, I learned to socialise by copying others, to the point of literally scripting conversations for most circumstances. I'm hyperfocused on monitoring my face, my expressions, my tone of voice and adapting it based on other person's reactions to me. Things like eye contact are very uncomfortable to the point of almost feeling painful. Having to have all of this in my head and actually have the headspace to listen to the person is exhausting. If we're in a crowded place or anything is causing me sensory issues it is even worse. After socialising, I analyse my performance and feel very anxious about whether I did it right or wrong.

Things that can prevent burnout are different for everyone but things like:

• Ensuring the person is encouraged to unmask at home. E.g. some people stim and have learned/been forced to stop this but being allowed to do this, even if just at home, can help people regulate themselves.

• Not forcing eye contact at home

• Taking time off e.g. staying home during the school holidays instead of going abroad (often very stressful for autistic people) or hanging out together at home doing what they enjoy instead of going on lots of day trips because it's what you "should" do.

• Letting them have time alone not having to socialise. Obviously not suggesting it's healthy for them to spend every day in their bedroom isolated but if they're starting to struggle with autistic burnout, they may need a lot of rest. If they can find quiet hobbies e.g. crafting or writing this is ideal.

• Allowing them to eat their 'safe foods' if they have food/sensory issues and making sure it is easily available to them. I can force myself to eat a meal I don't like the texture of to be polite, and if I do it regularly, it drains my battery more.

• Paying attention to and making adjustments for sensory issues e.g. seamless clothes or wearing more casual clothes than you'd normally think appropriate during the day.

• Encouraging them to understand their limits and helping them find ways they can stay within them. Their limits may be different at different times. E.g. maybe their friend wants them to come over for a sleepover and they're stressed but feel bad about saying no. Can you help talk through an alternative? Is there a way they can see their friend for an hour? Can you be the bad guy for the sleepover? Can you help them brainstorm how to write the text? There's often a lot of guilt and desire to force themselves to be "normal" and they may feel angry at themselves because something so easily for someone else is so hard for them. Challenging this and encouraging them to take care of their own needs, while still caring about others can help.

• .Sticking to a routine e.g. not bringing surprise guests over without warning them, not changing the furniture in the living room without discussing it with them, not having workmen over for 3 days if not strictly needed right now.

Some of these things might always be helpful and some might be needed temporarily as they start moving towards burnout. The accommodations needed can change over time. I see it as a battery that gets depleted and some things deplete it more quickly. People talk about healing after burnout and I think this is often reducing demands so the battery can replenish again. Ideally, this happens before they actually reach burnout.

Take the assessment.

My sister has autism. Was excelling at school all the way through Year 9. Top of her class. Then she wasn't. Attendance in GCSE years was 34%. Complete school refusal, meltdowns, running away. Discharged from CAHMS 3 times because she wouldn't engage with them. Failed most of her GCSEs because she ran from the exam hall and didn't sit the test because she didnt have the diagnosis to make the adjustments she needed.

Parents ended up paying for a private assessment in Year 12 which massively helped things but by then the damage was done, just too far behind. A levels results were Ds and Es. Ended up having to do access courses etc before managing to get into uni once got a handle on things. Graduated with a high first class honours degree in a STEM subject. Now doing a PhD.

The painful middle could have been far less painful had it been identified earlier.

Name changed as quiet outing. My daughter struggled in yr 5 and that increased in y6. We decided to go for a private assessment prior to starting y7 and I’m glad we did. It’s the classic time for the divide between peers to start widening. My daughter’s academically able but finds the social side hard. The diagnosis has given her more understanding about herself and has now started counselling. She’s refused any support at school that makes her stand out in anyway but they keep an eye on her and support will be there in the future if she needs it.

Part of me does wish we’d had the assessment sooner, my daughter masks so much and primary school was exhausting for her. The teachers didn’t pick up on anything except her speech when she was very young. I think that’s all had an impact. With waiting lists increasing, you may want to start the ball rolling.

I was referred to Social Services for DD3, though, as a safeguarding matter. Fortunately, I knew the law and knew that I was in the right, so I told them to crack on when they threatened to send the police for a welfare check.

To be fair, DD2 & DD3 did both get 'needs based' provision at mainstream school. It wasn't adequate and didn't work, but it was based on need. DD2 had an ASD diagnosis. DD3 didn't, but the teachers said 'Oh we assumed she has ASD because of her presentation.'

Equally, DD2 with an ASD dx was placed in an independent special school directly after I applied for her EHCP and had her statutory assessment. DD3 was also placed in an independent special school directly after I applied for her EHCP and had her statutory assessment, and she had no diagnosis of any sort.

If you get her on a waitlist now she'll be in high school before you even get anywhere with it. Which may well be when things start falling apart a bit (that's what happened to us and I really regret not doing more earlier). 7 is still a baby, hormones and teenage years can be brutal for autistic girls.

I agree with this there is no harm in going for the assessment. The waiting lists are massive too so if you bow out now you could wait ages if a problem occurs and you really need the support.

I was diagnosed as an adult. My mum saw my struggles and basically kept telling me I was fine, that I had to try harder, pull myself up by the bootstraps etc. I think she did this for good reason - she didn’t want me not to be able to cope with life. I love her dearly and understand her intentions.

However I suffered badly with depression and anxiety. I remember doing group therapy and thinking that none of these people seemed like me either. I felt fundamentally broken and hated myself even though on the outside I was very good at appearing happy, normal and even sort of confident. Things like standard CBT didn’t work at all and made me worse. Secondary school was genuinely traumatic for me.

As an adult I was (mis)diagnosed with borderline personality which is very common for autistic women.

It may be taking every ounce of your daughter’s energy for her to appear okay at school but she might not actually be. If you are going to make her aware of autism, let her know that people have mentioned she might have it, look at strategies to support her assuming she might at least have traits and make sure not to shame her then you are not necessarily BU. You can discuss it as she gets older and she can decide if a diagnosis would help her (most people I know have felt it was helpful so I think it’s a shame not to do it now when she’s younger but that’s just my opinion).

If you plan on dismissing her struggles because she’s able to function fine in certain situations, keep pushing her to “get better” etc even if it comes from a nice place (because we all want our children to function independently outside of us) then you are BU.

I can’t understand why you don’t want to though if it’s possible: If there were infinite resources I’d say why not just assess literally every child? If she’s not autistic then that’s the end of that. If she is, you might be saving her from a lot of self-esteem issues and a situation where she masks so much that by the time she is an adult she has no idea who she is or how to unmask.

I think you should explore your assumptions here - do you think that a diagnosis will give her “permission” to be less high functioning? Is it that you think it’ll hurt her to find out she is? That it will limit her?

Another thing worth mentioning is friendships. As an adult I’m in a lot of groups for autistic women and I’d say almost all of them find it very difficult to be friends with neurotypical people and only found real friends once they were in neurodiverse spaces.

One of the things you find with high functioning girls is they struggle with a lack of close friendships or they’ll move between friendship groups and are always on the periphery. They may manage romantic relationships better but may be taken advantage of a lot. (Some stats say 90% of autistic girls/women experience sexual assault or rape).

The friendship issue has persisted for me into adulthood and I’ve struggled with having friends even though I make the effort. I think that I’m being nice, making small talk, asking questions, not being too pushy etc but people do not like me or at least don’t like me enough to become close with.

I feel more accepted by autistic women but I don’t feel I fit in there either. I feel extremely uncomfortable when they’re unmasked and not following the social “rules” I so painstakingly tried to force myself to understand. I have very judgemental and even angry thoughts in a group where someone is talking too much about their special interest for example.

Not because I personally am bothered by it but because I’ve internalised the shame that it’s wrong. I’ve met others who have verbalised this same sentiment especially after experiencing a lot to shame growing up.

I end up feeling in the middle to two worlds. Not normal enough to be neurotypical but very uncomfortable around other autistic people. Like I know I’d be safe to be the real me but I almost physically cannot because I don’t know how.

I often wonder if I lived in the world as it is nowadays and had more access to being diagnosed as a high functioning girl, whether I’d have ended up a lot mentally healthier and I think I would have.

Definitely do it. My DD was fine at that age, transition to secondary was a disaster and we've had mental health problems ever since. It takes soing to get support that if you wait until you need it, it will be too late.

^^ this.

One son has an EHCP with c.£100k funding per year as he needs a special school and transport.

My other has an EHCP with £0 as it’s for dyslexia so it’s interventions which are free to provide (like extra time in tests)

Just because a child seems fine doesn’t mean they actually are. Too often the signs are missed (not necessarily by parents but also schools/other professionals) or seen but not recognised for what they are.

genuine question - if you had a diagnosis sooner what would that have changed? Ie: if she was masking and seemed fine, what intervention would you have put in place?

It feels without a crystal ball you couldn’t have known she was going to burn out? Or were there signs you missed?

You can ask for a costed provision map.

Some EHCPs come with a lot more funding than others.

Get the diagnosis.

My daughter masked well and handled school just fine until the day she didn’t. It was like a switch flipped and indeed that is what happened. She was in an accident and the physical recovery was difficult. Months of managing that at school and home meant she couldn’t also manage to mask in the same way. Even after she recovered physically, the damage was done and she was a giant ball of stress every single day.

By the time we needed the assessment, it felt like everything was moving in slow motion. We had the money and savvy to navigate the system at maximum speed, but maximum speed is still glacially slow when your child is struggling.

If the school is willing, get everything set up now.

Then they can get a diagnosis when/if they need it?

i speak from same position as OP with 2 kids, one diagnosed up the eyeballs the other one i know could qualify for a diagnosis (or candidly i could buy him one from an unethical doc) but i’m holding off whilst it’s unnecessary as he has good grades, is happy and has heaps of mates. So it just feels like there’s nothing to fix right now