Mild autism - girl

[RRai]

My daughter 10 year old, recently got diagnosed with 'mild autism'. During the session, the psychiatrist said, "Ohh I should not be revealing this now, but it's ok to say that your child has mild autism". My daughter was with me during the session. I went exploring for the diagnosis to find more clarity but now, I feel more conflicted. My daughter has not taken the diagnosis well, she is not an adult to think it rationally nor small enough to just ignore. I would have preferred if I was given the opportunity to reveal this at the appropriate time. I also feel conflicted in the diagnosis as my daughter is highly functioning and although I know that girls can mask these traits, but can the diagnosis be confirmed just from one single session. If this diagnosis is correct, how should I navigate ahead? How can I help my daughter? Right now, I am telling her that the diagnosis may be wrong and I can see her relaxing, but this may do more harm to her if she has mild autism. Please help, I am as confused as ever. Thank you very much!

I’d be getting a 2nd opinion, there’s no such thing as ‘mild autism’. You are either autistic or not, the additional support that is needed will very much depend on the person.
There are several assessments that are considered the gold standard, if you take a look at the National Autistic Society page it gives a lot of information.
Generally they need specialist training to diagnose autism, reports from schools and it’s a multi-disciplinary approach so the assessment is reviewed by other specialists.
Your psychiatrist sounds extremely unprofessional and shouldn’t have said that in front of your daughter. She may be autistic but I wouldn’t assume it in this case.

Yes agree with the previous poster. Mild Autism is not a valid diagnostic term.

in terms of your daughter break down her needs and the support she needs for those, I have 2 children with autism diagnosises but the actual support they need is different as they have different challenges.

Please don't make a big thing of it might be wrong as if autism diagnosis is soemthing bad or to be afraid of.

Emphasises it's just that different brains work diffently and it can help us to know how our brain works. Talk about phones and androids can be a helpful way to do this. You don't want her thinking it would be bad to be autistic!

Why wss she seeing a psychiatrist?

There are some good autism resources out there

And yes you want a proper diagnosis.

I'd echo this.

No Psychiatrist worth their salt would use this type of terminology these days. Or blurt it out in front of your DD. They would use the proper diagnostic terms as set out in the DSM5.

Thank you for taking the time to respond. I had a second follow up appointment with the same psychiatrist and today the dynamic was different. She appeared more professional and certain of what she was saying. I do wish to explore this via the NHS route as I did it privately. I hope, I get better answers.

Thank you for taking the time to respond. I do wish to explore this further via the NHS setting. Since, my daughter is highly functioning not sure if getting a formal diagnosis would do more damage to her. Last week as soon as she got her report, the first thing she told her friend was, " I am autistic and would you still be ok to be my friend", hearing this was very difficult for me. As, I was trying to relax her, in the evening by which time she had looked into autism, she was like, "mummy if there is nothing wrong with it then why is it called a disorder? I was out of words, didn't quire know how to handle it. I feel if I don't downplay it she might be more anxious but not sure if that will do more harm...hmmmmmm

Thank you for you time. Today the same psychiatrist confirmed that, my daughter is autistic. She also confirmed that mild terminology is wrong. Either you have it or not. So, need to plan my further steps now.

I see this has been sorted but for the avoidance of any doubt, the level of support needs your child has now isn't indicative of her support needs for the rest of her life. It is so very variable.

Did this psychiatrist actually follow the NICE approved assessment? This involves much more than a few counselling sessions. I therefore believe they have not done that. Down the road when you will be looking at accommodations or resources, I fear this ' non diagnosis ' will carry no weight.

I imagine your psychiatrist is right that she is Autistic. You need to stop with saying she might not be. I would make it an absolute priority to get assessed officially by a professional following the correct guidelines.

I fear you will be waiting an incredibly long time on the NHS. You can do this privately. I'd go to a completely different provider, not this psychiatrist. Look online.

My child had a private assessor and it covered all sorts including role play so there could be little doubt. We have a detailed report with this and outcomes. You absolute need this.

I cannot stress how beneficial it has been for everyone, especially my son, to have this diagnosed and to have clarity.

Where's their report? It doesn't sound right to me. I believe they're probably right she is ' high functioning Autistic ' but it all feels very unprofessional.

Maybe the clinician used “mild” as some people get confused by autism as a wide-reaching umbrella term. Personally I find a lot of HCPs can be quite patronising and assume that you’re a bit stupid (don’t get me started on the dentist talking to me about “bugs” and gum disease - just say bacteria!) so it doesn’t surprise me to hear a psychiatrist saying “mild autism”.

When my daughter was diagnosed, it was said that she had an Asperger’s profile. Of course, Asperger’s isn’t used anymore, but I didn’t freak out at the use of old terminology.

Personally, I can see both sides of the argument when it comes to “autism is just autism, and one shouldn’t try to separate the ‘high’ and ‘low’ functioning profiles… it’s all the same” vs “actually it’s quite helpful to differentiate between autistic people with and without LDs because their needs are very different”.

I did it via a private clinic. Did it becasue I was told that the wait in the NHS is very long. I will be given the reports in few days.

It sounds a bit odd for the psychiatrist to make this statement without your dd having gone through the formal process of being accessed. Having said that, maybe she knows her well enough by now and can see clearly that she is autistic.
It sounds like your dd is handling it well. And I find the way she talked to her friend actually really touching and sweet, it shows a willingness to be vulnerable and I like the way that kids can be so direct. I hope her friend reassured her.
With your concern that a formal diagnosis could do “more harm” I don’t think it would. It would be an accurate reflection of your DD’s struggles as well as strengths and provide a road map as to the support she needs going forwards. (She may not need much extra support now but in future she may need some small adjustments like extra time on exams if she has slow processing, sensory breaks at school if things get too loud, social skills support when friendships become more complex). I don’t think the answer is to put your head in the sand or be afraid of the truth whatever it may be, but rather to look at truth head on and accept it. (I’m not criticising you by the way, I’m sure the whole thing is a shock and also worrying to you). It’s not the diagnosis that’s harmful, it’s the lack of support and understanding that can happen. She is more likely to get some support and understanding if she has a diagnosis, and she will also have more understanding as she gets older of why she is the way she is, why certain things are hard for her.
with her question about it being called a disorder, you could tell her that some people call it “autistic spectrum condition” instead of disorder because they don’t agree with that word. But also it’s there because most autistic people have struggles and challenges. But that you will figure it out together and all human beings face limitations and challenges in life. Doesn’t take away from how amazing each person is, and how amazing she is.
Autism can have a stigma but thankfully it has less of a one in the uk (or at least where I am, that could be different in different places). There are a lot of autistic girls and women on Instagram and other platforms sharing insights and thoughts which I find very helpful as someone with a few neurodivergent people in my life.

DD's therapist who she saw because of anxiety told us she suspected DD is autistic after the second session. Difference - DD was 14 and we also had quite a good idea that something was going on.

Still, it took 7 months for DD to agree to an assessment, she was reluctant to be labelled. It then took several appointments for her and for us parents plus school reports to all come together into a fully written detailed diagnosis.

I would be going back to your practitioner and request the full report, it's your child's medical record now.

Going forward - it's now a year since we got the diagnosis, it made a huge difference, DD is still seeing a therapist, she is working on how to live as an autistic teen, she is learning mechanism, especially social ones and it also helps with school and university in future.

Thank you for taking the time to comment. I need to look into the full report, still waiting for them, so not sure what guidelines were used. I went privately through a clinic, but do feel I need to go for a second opinion to have 100 % clarity.

@RRai if you have a report on way it will hopefully be enough but just be careful because I do believe there are some institutions that will try counter it if it's not water tight. E.g if you pursue an EHCP down the line.

I want to also reassure you. I found it very difficult to accept even though I knew for certain anyway. I snapped out of it quickly. My son is doing great, he jokes about being Autistic, has a few minor accommodations in secondary school and did at primary. He whizzed through his SATS exams because of that. He only needed a 2 minute leg stretch during his exam ( ADHD also) but these little things are huge.

You'll find by the time she gets to secondary, she'll realise she's not alone. The number of Autistic/.ADHD kids in mainstream ( high functioning) is higher than you'd imagine. Alot are probably undiagnosed as it seems so ' mild'.

Your daughter will be really good with this as long as you are.

Thank you for taking your time to comment on my post. My conflict started because I was not sure of the diagnosis (found the psychiatrist extremely unprofessional) compounded by the stress that my daughter was displaying. However, today after the second setting with the psychiatrist, I am more at ease but also the need is clear for more clarity. I am sure this journey will be challenging for me as a parent but more for my daughter as an individual and I recognise that. But, I am determined to help her everyway possible, need to empower her positively with grace and kindness.
Thank you for giving the pointer about answering the 'disorder; comment from her. One step at a time...Fingers crossed!

My son absolutely hates the disorder element and I understand that. He's probably like your daughter. He is incredibly intelligent and above average in his academic outcomes so it's really patronising.

Many use the term Autism Spectrum Condition or ASC. I'd just empathise with her that the terminology is very patronising and many services now insist on ASC not ASD.

Thank you for such reassuring answer and sharing about your son. I am sure he must be doing great :-)

Plan to meet my regular GP with the report and see what he says...will follow from there. Thank you for the heads-up about the EHCP..Fingers crossed!

The psychiatrist doesn’t sound very professional.
All I would say is that just because her autism (assuming correct diagnosis) is affecting her mildly at 10, doesn’t mean it will at every age, so having a diagnosis now is a really good thing imho

Thank you for your time. I am glad that you daughter is more accepting of it now and the process has been beneficial for her.
Its been the same thing here, last week I felt my daughter was very stressed and fearful of being labelled. This will be a long process so preparing for it..

The teenage years and secondary school are often very difficult for children with autism. It's great that you have this diagnosis early.

My daughter started having difficulties in KS2 and by year 9 she had left school for good. Mental health services, knowledge and understanding within many educational establishments and the EHCP system are not fit for purpose.

We had to fight and fight and by the time we got what we needed it was way too late for our daughter. We have been utterly failed, it broke us and our daughter suffers.

Not everyone's story is like this but it's encouraging that you have time to get things in place to support your daughter.

@Greaterwaterparsnip it's horrible. I know from all the groups online how awful this can be and it has always filled me with fear

I'm so grateful to have the diagnosis, the report and so far a school that has been able to accommodate needs. It's hit and miss whether the school will do this or even resource it.

Getting a diagnosis now and understanding what kids need help with before secondary is absolutely essential. But not always possible if you can't afford it and are left floundering on NHS waiting lists for years.

I'm so grateful to the teacher at my son's school who encouraged me to see he was different and pursue the diagnosis.

Just because someone is of above average intelligence doesn't mean they can't/don't have a social communication disorder. There's nothing wrong with the term 'disorder' really. This is why it's actually more beneficial to separate the different kinds/levels/impacts (whatever helpful term) of Autism. Autism isn't necessarily a LD condition.

However, those who have LD alongside Autism or those who don't have that 'above average' intelligence may probably not find it patronising like those who believe they're more intelligent than they're treated because of Autism. I rarely see this group or their parents insist on 'Autism is Autism - there's no such thing as severe, moderate or mild'.

The fact is that some Autistic people struggle (internally and/or externally) more than others. For some, it really is a disorder and a disability. Let's not take their voices away.