Seeking Support For My Autistic Child

A mother shares her story

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I knew it wouldn’t be easy – anything that is perceived as “anti-trans” and sits at the heart of a “major scandal that requires a public inquiry” isn’t going to be a walk in the park, but it feels like searching for the holy grail in mental health care: the quest to find neutral therapeutic support for my daughter. Against unlikely odds, I think we’ve now found a place for her at a counselling service that I can trust not to conflate her autism and a belief that we all have a gender identity. Is it my persistence to get her the support that she deserves, is it sheer good luck, am I being wildly optimistic or is sanity finally returning to support vulnerable children and young adults?

Just over two years ago, my 16-year-old autistic daughter began to wonder if she was meant to be a girl at all. In what is becoming increasingly common amongst autistic girls, around the time that her periods started she became incredibly distressed about her changing body and the sensory aspects of breast development and periods. She still hates her breasts and wishes they weren’t there. She still hates periods and is glad that the combined contraceptive pill mostly stops them from happening. These intense feelings coincided with the bullying she was experiencing at school, then aged 13, related to her autism. It was eventually recognised by the health professionals supporting her that she was experiencing autism-related puberty distress, as well as trauma from the bullying and, little by little, she was able to unpick and address her feelings. She is not currently gender questioning. So, what’s the issue?

My daughter is still finding life very difficult to navigate. She’s academically intelligent, yet has been assessed by an Educational Psychologist as being in the bottom 10% of her peer group for emotional intelligence. Right at the time when other girls her age are riding the emotional waves of adolescence with a neurotypical mix of angst, confusion and seemingly inexplicable random anger at their parents, my daughter is often left wondering what’s going on. Why do girls care what boys think? Why does any of that matter anyway, when she’s currently not remotely interested in sexual relationships with girls or boys? Why can’t girls and boys just wear whatever they want without it being a “thing”? Her “big questions” are very different from those of her peers.

During her mental health crisis in 2022, she was violent at home, primarily towards me, and she struggled to engage with anything that normally brought her joy. Thankfully we’ve moved on since then and she’s back playing football on her local team and playing music on the piano, amongst the other hobbies that she enjoys. However, when she’s unsure about social situations and frustrated at her own lack of understanding, she’s still prone to the “fight or flight” reaction that comes from the demand avoidance side of her autism. She doesn’t understand that she’s scaring her peers with her emotional and sometimes physical outbursts – in her head it’s rational that when she threw a table, a mug or a pen, they would recognise that she hadn’t intended for any of them to be hit by it, so everything would be OK. She doesn't understand why they back away and don’t seek out her company, not knowing whether they’ll be talking to the brilliant, witty friend that she can be or shielding themselves from flying objects.

She recently started Sertaline, an anti-depressant that’s also used in lower doses to treat anxiety. We had previously hoped that talking therapy alone would be all she needed, as we’re wary of the risks of SSRIs for children, but we also recognise that she’s being held back by the incredibly high levels of anxiety related to how she processes information about the complex modern world in which we live.

And so began my quest for a counsellor who wouldn’t conflate autism-related puberty distress with gender identity when listening to my daughter’s innermost thoughts about herself, if she started to share her feelings about her body with the counsellor. I fully expect her primary concern to be about friendship, but the more she builds trust with a counsellor, the more likely she is to talk about her body. I know this because she’s open with me about it and together we find ways for her to feel more comfortable about herself.

Unlike in the education sector, the NHS does not have safeguarding guidelines in place that recognise the risks facing a gender questioning child when they enter primary care like a GP or secondary care like CAMHS. Instead, there is a risk of conflation with a number of other factors such as autism, sexual orientation or trauma (where children might be identifying “out” of their own body that they perceive to be weak) following bullying or sexual assault.

Ironically, the current statutory guidance for schools in England points to the NHS-commissioned Cass Report which expands upon these risks, and also makes it clear that there is a significant difference between being LGB and being gender questioning. Unfortunately, the conflation of LGB and “T” is prevalent across society, with insults like “transphobe” and “homophobe” often used interchangeably. This key schools’ legislation spells out the difference in risks between two very different issues – that LGB children are at risk of bullying, whereas in addition to a risk of bullying, “caution is necessary for children questioning their gender” because they may have “wider vulnerabilities, including having complex mental health and psychosocial needs, and in some cases additional diagnoses of autism spectrum disorder and/or attention deficit hyperactivity disorder.” Equally importantly, the schools’ legislation recognises that parents have a vital role to play, when their children are facing risks where “there remain many unknowns”.

My daughter doesn’t want private counselling, believing that “they are just after our money” – I have tried to disavow her of this, but to no avail. She also finds online counselling difficult to access because conversations through a screen “remind me of covid”. I can see her point on that one, given many people struggled to build and maintain personal connections during lockdown, without being face-to-face. Although I did try my best, there was little point in me continuing to put effort into giving private or online counselling a go – so with a referral from CAMHS (who have been helpful in supporting my daughter over the last two years), I set off to establish if there was counselling service that they recommended which would be able to support her, whilst also recognising her safeguarding needs. They recommended a local service which had a long waiting list and I asked for her to be added to it.

I had tried instigating a conversation with the counselling service about my daughter’s needs whilst we were on the waiting list but didn’t get a response, despite chasing. After about 5 months, upon reaching the top of the list, the conversation began.

I started the discussion by sharing the key information in the statutory schools’ guidance (paragraphs 205-209), expla ining my daughter’s immediate needs for support with emotional literacy and my concerns about the risk of conflation with gender identity. The risk relating to the conflation of both sexual orientation and autism with gender identity is explained in this guidance document and the Cass Report is referenced within it for further information. It is in these paragraphs that the importance of working together with parents is stated, to support these vulnerable children. In line with this, I asked that if my daughter became gender questioning again, the counselling team would raise this with me so that we could discuss the best way forward – given the journey she has already been on, I had planned to go back to the primary and secondary care NHS teams that had supported her back in 2022-2023 and to have a pragmatic conversation with the counselling service on whether it was feasible to continue the therapy. Instead, I was told that counselling is fully confidential so this would be impossible as an approach; I was asked if I had issues with trust and was then offered counselling myself. Despite my best attempts to have a sensible discussion about it not always being in a child’s best interests for an adult to maintain secrecy if that child is at risk of harm – not least because there still isn’t a route within the NHS for gender questioning children to have access to care that is aligned with the Cass Report recommendations, with the fledgling regional services still funnelling children towards unevidenced medical interventions – I had to reluctantly conclude that five months had been wasted and that I needed to start again.

I went back to CAMHS for further recommendations.

Now armed with the names of three more local services that it recommended, I set off again to establish whether my daughter could safely access neutral care.

One service came back pretty quickly with a thoughtful holding statement that it understood the ask and would have further discussion within its wider team. Although it was eventually a no, the response was much more considered than the first service I encountered: they recognised that my daughter’s primary needs were around emotions and friendships but they didn’t want to have to stop the counselling if she brought up a subject that meant that this might be necessary. Additionally, they said that the young person’s “individual journey” is important and that confidentiality was a part of this.

Another no followed shortly afterwards. This one was slightly more awkward in that it was apparent that the service saw my views on gender identity belief (views which are centre around safeguarding and are reflected in both the schools’ statutory guidance and the documents to which it links) as very different from their own values. However, unlike the first service, this was probably one of the most pleasant “let’s agree to disagree” conversations that I could have hoped for on what is clearly a very difficult and at times divisive topic. We parted with a mutual gratitude for the respect that each had shown the other during the written and verbal communication.

After almost giving up hope of ever finding a counselling service, I finally got some traction on the last remaining possibility. They had previously said no, mostly based around confidentiality, but had agreed that we could keep the dialogue open.

Just at that time that I had pretty much accepted that having no counselling at all was the better outcome, if it meant that my daughter wasn’t exposed to risk, I had a phone call from this service. Following recent training that they had received on the Cass Report, and despite citing the importance of confidentiality, this latest conversation suggested that they now had a different and better understanding of the harms that gender questioning children face. Whilst they couldn’t agree to “sign” anything from me to confirm their understanding – I had sent them information about my daughter’s risk but hadn’t asked them to do this – they felt that they could accommodate my request for safeguarding within their existing contract. The main key difference was that they were talking about when to involve parents if a child is at risk of harm. Another key difference that helped demonstrate the likelihood that they were centring my daughter’s well-being was that they were happy to keep the dialogue with me open during our time on the waiting list.

My experience has given me pause for thought on how children’s safeguarding is dropping through many cracks. It was the NHS which commissioned the Cass Report upon which the schools’ guidance leans, to manage the “extreme caution” that it recommends regarding social transition, yet the NHS guidance for children entering primary and secondary care services still doesn’t seem to recognise this risk. Further, the schools’ guidance cites the importance of understanding the difference between being LGB and gender questioning, yet the government (and both public and private healthcare and therapy practitioners) talks about “conversion therapy” without taking this significant difference into account – this impacts adults as well as children. The puzzle pieces are all there but still in their respective boxes.

The schools’ guidance is issued by the Department for Education, which is also responsible for child protection. As well as the Children Act, child safeguarding is governed under the statutory multi-agency Working Together to Safeguard Children legislation, which the NHS, police and every other public body working with children must follow. Every agency has its own safeguarding thresholds – for example the NHS can talk to children about pregnancy advice and options but schools can’t – but equally, it makes little sense that some agencies simply wouldn’t involve parents if a child was at risk of harm. Yes, in some cases parents are a risk to their child, but this is already managed under the legislation. Just as with Prevent, unless it is clear that a parent is complicit in the harm that a gender questioning child is facing (e.g. they are bypassing the law and accessing puberty blockers, despite the UK-wide ban) there is no clear reason why gender questioning children are being afforded a level of confidentiality about their “identity”, when it is clearly in the child’s best interest that parents and agencies work together to protect children from what is unfolding to become one of the greatest safeguarding and medical scandals of a whole generation.

My daughter hasn’t yet accessed the care of the counselling service, and I shall remain cautious about her doing so. We’ve agreed to a pre-meet ahead of her first appointment, where her allocated counsellor and I will talk everything through to make sure that all the adults involved in this care pathway are on the same page. But hopefully this is a sign that we’re a step closer to sanity returning at last to mental health care, bringing safeguarding along with it.