School advised daughter likely autistic but should not get her tested

I can only speak from my own experience, but I too was fairly successful at school on the academic front. Where everything fell apart for me was university where social and collaborative working comes to the fore. I dropped out of a bricks and mortar establishment and progressed via the OU where at the time I could mostly work solo.  But I believe even that now places more emphasis on collaborating with fellow students. I suspect these days an autism diagnosis would activate more assistance at least in the educational setting. 

I am a little surprised with this, but of course I don't know every side to this story. I can tell you about my daughter though. In primary school, she was diagnosed so that for her last year of primary school the SENCO were aware. She was also academically gifted, so no worries about her ability and she was (and still is) rated higher than average in nearly all subjects. However, it took her a lot of energy to get through every day because she was masking all the time - the teachers noticed nothing because she was that good at hiding it.

Me and her mother felt though that, if she were diagnosed and she did end up requiring additional support, getting prepared before her transition to secondary school would be the best time. As a result, she wasn't treated like a neurotypical person lost in the crowd, she was well prepared for secondary education - for example, she didn't have one transition day like everyone else, she had several, one a month up till her summer term, so she got to understand the subjects a bit more, understand the layout of the new school, meet some of her new teachers, and so on. We recently had her parent's evening. All teachers said she was doing great in all her subjects (not surprised), but they also took the opportunity to ask if they could do anything to help her more - so in a couple of lessons she's now sitting with some of her closer friends which helps her feel more comfortable.

And that's the difference - instead of thinking this might hold her back, it might actually be far more positive, which is why what you said about your SENCO is really surprising to me. It could also be we got very lucky with our daughter's support, I can't say. Ultimately it falls to you as the parent to make the decision though, you know your own child better than anyone and I'm sure your instincts will guide you.

My experience with my son was struggling to get school to agree to our suspicions which made it harder to get to the stage of diagnosis so the fact that they suggested it is positive.

If you seek a diagnosis the waiting list is long, so it is good to get on it early, especially as often Secondary school can be a challenge. Having a diagnosis means you can ask for adjustments to help manage school if needed. Only school staff need to know. My son chooses not to tell peers. It might also be helpful later on in work, if there is a need for reasonable adjustments.

That’s wonderful - what a lovely thing to happen! 

I had much shorter bouts of mutism up to about seven years of age. My initial long-period was ended by a particular event. I have always had a fascination with animals. The teacher brought into the classroom an incubator and some fertile hens' eggs. When the eggs started to hatch and cheep, I started to talk.

So I’m from the States, so some of what I say might not apply or might be different in your case.

My daughter is 7 and was diagnosed at around 4. C has PDA Autism, so she struggles with rigidity and gets extremely overwhelmed when she’s in trouble or feeling a sensation she does not like. For first grade we had a go at trying to keep her in a normal public school classroom with a few adjustments made for her, but it was a horrible experience for both her and the teacher. The class size was too big, the schedule was too rigid, and she had few opportunities to express herself. The teacher was great (though inexperienced in dealing with Autism), but the principal saw C as just being another poorly behaved child who was not disciplined enough at home.

Using her Autism/ADHD diagnosis we were able to secure a spot in a classroom made for students with social/emotional impairments. This meant that C‘s coursework would still challenge her, but she would benefit from less rigidity, half the class size (from around 23ish down to around 12ish), and plenty of time to do what she really wants to do: Make art. She’s done MUCH better because of it.

I don’t know if you have social/emotional classrooms like that in the UK, but if they do, that would be a benefit of getting an Autism diagnosis.

I agree with Martin, thinks may very well change when she gets to secondary school, ASC isn't purely a educational "disability", obviously in your daughters case it's the opposite, can I ask if the school are supporting her advanced intellectual capacities? Having an intelligent child held back can be just as disruptive as one who needs more help and isn't getting it.

As ana adult, it is not the adjustments from others that matter, its the adjustments you make for yourself. While you want to push you need to know where the line is.

As a child I am not sure.

Yes - your words ‘you learn to fit in, but it takes a toll’ - 100% agree. This is why I think a diagnosis is so helpful - because it gives the child, the family and the school greater understanding, awareness and acceptance of the differences and needs that might be there when a child (or adult) is autistic. Not having a diagnosis doesn’t make any of the difficulties autism might present go away - but having a diagnosis can enable all involved to find appropriate strategies to help. And as for stigma - as an adult you don’t have to share your autism diagnosis with anyone unless you choose to disclose it. My eldest has chosen not to disclose it to past employers, and is now doing a PHD and has chosen not to disclose it to the University either because he doesn’t think it’s relevant to his working life or that he requires any adjustments or support from the University connected to him being autistic. 

That’s really interesting Martin. My youngest developed Selective Mutism on starting school - but sadly a lack of timely and effective support meant he experienced Selective Mutism throughout his educational life. So hard for him - and heartbreaking to watch him struggle in that way. I’m happy for you that it was only for 3 months - it’s wonderful that you were able to overcome that. 
I agree with your comments - very academically gifted autistic pupils can achieve at a high level - but the cost of not having support and understanding for their more complex needs as autistic people can be devastating and eventually this most likely will impact on their academic work. When so much of their self esteem is invested in academic success (because they often see it as “the only thing I’m good at”)  the pressure of that can be immense. 
Our autistic traits are there - diagnosis or not - and not getting a diagnosis does not get rid of the problems we face. There is no advantage to ‘hiding’ from the reality of our autistic traits, and there is great advantage to having a better understanding of our autistic traits and also - so importantly - acceptance of them. In my experience we can only be truly happy if we accept who we are, embrace the positive aspects of being autistic, and practice loving kindness to ourselves when we are struggling with aspects of life that our neurotypical peers find a breeze. 
What troubles me about this Senco’s comments about ‘stigma’ is that I think it reveals her own internal negativity about autism - and that’s the last thing a Senco should be conveying to the children and parents she is supposed to be supporting. It’s universally recognised that early and appropriate interventions for children with challenges in school is a huge advantage - not a disadvantage, and how can this little girl get help for the challenges she has due to being autistic if everyone is saying she isn’t autistic?! 

I find these stories so dispiriting - it’s been years since my children were in Primary School and I would have hoped things had got better - but it often sounds as if things may actually have got worse. 

I meant to say: ‘…..real and *NOT* erased by being able to pass a load of exams at school’! 

One other thing: no matter how frustrating or even incompetent the staff may be who you come into contact with whilst trying to get help for your daughter - always always be unfailingly polite and friendly with them. Firm when necessary- but always polite and friendly. Because ultimately you want to keep things as positive as possible at all times - whilst being informed about all the issues involved and firm about the fact that you are determined that your daughter gets the help she needs. You don’t want your relationship with staff at school and the LA to become in any way confrontational or toxic - this can easily happen to parents when they feel schools are failing their children - emotions can become heated and the relationship with school can easily deteriorate. So you need to keep your cool at all times and be very professional and calm. Firm but calm. 

I had a reading age of over 18 by the time  I was 10. School was not hard, it was mostly boring, but I did everything and never got into trouble to fit in.

I did not know I was any different, maybe I am not, I will find out I the next month for sure.

While thinking you are fine, or a bit eccentric is ok, and ensures you have no excuses, I did drop out of University and struggled in relationships.  I have been excessively driven in work, which has compromised my health due to stress and dehydration, compromised my social life, lead to me being alone for 27 years, cause significant distress, all because I did not know what I was doing. I have had sleep issues for decades and found it hard to control alcohol usage, I thought I was right and everyone else was wrong. I now see I had some cognitive distortions.

At what point would it have been good to know, I am not sure. Maybe at 18, maybe at 25, I would have been a bit kinder to myself. But 56 is a bit late to find out after suffering burnout and several quite significant and very long lasting depressive episodes.

The challenge if you are bright is you learn to fit in, but it takes a toll. You also struggle to see it in yourself, but feel a bit different. Eventually things mount up but you are too scared to do anything, until eventually something forces your hand, which may take a long time.

I expect each person is unique so there is no right answer.

If your daughter is autistic, she has no choice but to be autistic. However, even with a diagnosis, she and you, outside of school/education and health professionals, still have the choice of who to tell or not to tell about her autistic status. 

Swimswim said:

At a school SENCO meeting about her sibling the SENCO mentioned that my daughter could be Autistic, but advised that getting a diagnosis may be harmful for her

I'd suggest it could be far more harmful to her to live her life in ignorance as I did, and get a diagnosis at 60, when all the things that I might have been able to change/do armed with this knowledge, are lost to me.

Swimswim said:

She explained that my daughter clearly does not need any academic support due to her autism, and she did not feel that she would get any benefit from a diagnosis with her emotional and social needs.

That just amazes me.

Many fear this label of “autism” put on a child. The truth is; if she isn’t labelled autistic, the world will likely label her according to its perception, which usually means adjectives like  “weird”, “whiny” or “unsociable”. 
But after all, it is your and your daughter’s decision and you do know her and her situation best. Some do live a happy life without greater problems or the wish to seek a diagnosis for any reason (imposter syndrome, resources, etc.).

I agree with Kate and Martin. Whilst it's great that your daughter is excelling academically at the moment, this is just the start of her life, both in education and more generally.

If I were in your shoes, I'd pursue an assessment now - during what might prove, over time and with the benefit of hindsight, to have been an ideal window of opportunity to put the foundations of ongoing, autism-related support beneath her.

If you were to search this forum, you'd find many examples of parents who have found themselves in the deeply upsetting position of needing to try and get assessments carried out, and support put in place, whilst their children are struggling to cope, including due to the increased social and environmental demands that are inevitably placed on them as they grow older.

Based on her comments, I'd suggest that the SENCO could benefit from some urgent training. 

Your child may not require much support in their education at present, but that might not be the case in the future. Secondary school in particular places much more social strain on autistic children than primary school does. If a child is not getting support then social strains can affect their educational progress. Extra time in examinations and other accommodations at GCSE and A-level, not to mention degree-level, can make the difference between success and failure for autistic people.

The level of social pressure can have very detrimental effects when the ability of an autistic child to cope with it is exceeded. I was an apparently sociable, happy and contented child until starting infant school at four and a half. The sudden exposure to a large number of other children and being away from my family for most of the day resulted in three months of selective mutism. My ability to cope with social change and pressure had been exceeded. I ended up being academically successful and after a number of degrees worked in biomedical research at universities all my career. However, as an undiagnosed autistic person it was very difficult. It would have been much less difficult had I known and had I had appropriate accommodations and support.

In short, I think that the advice you have been given, though well-meaning, is not in the long-term interests of your child. My own daughter was diagnosed with ASD at 19 when at university. She has told me that she thinks that without the accommodations she received she would probably have dropped out of her course. In the end she gained a first class chemistry degree, had the highest marks in her year and received a prize from the Royal Society of Chemistry.

Ok - for a Senco to say that a possibly autistic child should avoid getting a diagnosis ‘because of the stigma’ is frankly outrageous. And it’s rubbish too. I’m familiar with this sort of thing after many years of dealing with schools with my own autistic children (who are now young adults). I remember one Ed Psych telling us that we shouldn’t ‘bother’ to get an EHCP in place for my youngest son because “it won’t make any difference”! It absolutely did make a difference (more help, more leverage to get that support, free transport to college when he got older etc etc). So my advice to any parent is don’t accept everything your told - always do your own research and make sure your informed. Some staff in schools and LAs are downright incompetent, and some are simply unhelpful and trying to save money and reduce their workload. Sad but true I’m afraid.

In terms of your daughters academic ability - my eldest was highly gifted academically but still ended up getting a diagnosis - because you can be very able academically but still struggle in other areas of your life when your autistic - and those difficulties are real and erased by being able to pass a load of exams at school, and it’s still good to have that recognised and to have support with. 

And to be completely clear: getting a diagnosis CAN be helpful for addressing social and emotional needs. Apart from anything else it can be validating for the child themselves - and help them to have a greater understanding of why they struggle in these areas. Greater understanding of why we struggle helps us to find strategies that can help.

If I were in your shoes I would write to your school, copy in the LA and say that you think your child might be autistic,  ask them to put in writing to you their reasons for not putting her forward for assessment. Trust me - no one is going put in writing that they won’t assess her ‘because of the stigma’ - because that’s laughably inept! So get them to put in writing why not, and then you’ll have something to work with. Good luck!