To think autistic children with needs affecting their day to day life should go to the top of the waiting lists?

[orangeleopard]

As The title says, children who’s needs are severe enough to impact their every day life to an extent that they need help urgently should be put above all of the other children on the waiting list that ‘may’ or ‘may not’ be autistic. My son is in primary school and only able to do half days due to his additional needs, but is told to ‘just wait’ to have his initial appointment with a pedestrian. He hurts himself and others on a daily basis. He doesn’t sleep until midnight/1 each night as he’s so hyperactive. He has severe meltdowns that sometimes lasts hours. He cannot speak properly and has also been waiting years for speech therapy. He is a severe flight risk and runs as soon as he has the opportunity to. He also has no sense of danger and injures himself on a daily basis. His day to day life is affected so severely , as is mine as a parent and he needs severe help yet is told to just ‘wait’ for his assessment to get diagnosed and help. Yet there are children on the waiting list who yes, deserve to have an assessment but needs are not impacting their day to day life as severely- ie they can attend school ‘normally’.

am I being unreasonable to think children like my son should go to the top of the list and that the list should be based on need

I haven’t said autism can be cured. I said that, according to Tony Attwood’s research of thousands of autistic individuals, some autistic children can develop in a way that they no longer reach the threshold for clinical diagnosis in adulthood.

I have dedicated my life to understanding my child’s autism, however, my child isn’t defined by his autism. I accept his traits whilst also preparing him to be an independent adult. Taking my exes sensory bin issue as an example, if his parents had just allowed him to not do the bin because of the bad smell, he never would have learnt this essential life skill. Instead they expected him to learn to change the bin and they taught him ways to overcome and adapt to this part of life. A huge part of SEN schools is teaching life skills.

I have been working with young people for 15 years, and I have seen a change in parental attitudes, that I don’t think helps SEN children. In my experience, too many parents don’t expect their children to participate in everyday life because of SEN, rather than teaching their children ways to adapt, cope and mingle with society. A big example of this is the explosion of children, aged 5, being sent to school when they aren’t toilet trained. We need to be teaching our children life skills, SEN or not. One day I won’t be here, and my DS needs to be able to cope with the world. I would be doing my son a huge disservice if I didn’t teach him ways to work with his disability, rather than against it.

I also don’t believe that autistic people are a homogenous group of people who are all ‘significantly impaired’ and actually, I think we should be listening to a range of autistic voices. Unfortunately, whenever the issue of it being a wide spectrum is raised, or ‘low-fuctioning’ and ‘high-functioning’ a loud minority of people shout about masking and how every autistic person struggles massively in life, instead of looking at individual cases and needs. If you say that your family member doesn’t significantly struggle, you are told that your family member must be masking heavily or lying to you. I can give many anecdotal accounts of autistic people in my life who don’t feel significantly impaired, but instead of being believed, I must somehow be incorrect. I was told on another thread that if an autistic person doesn’t feel significantly impaired they are in denial! It’s very patronising and infantilising to the autistic person. Having met my friends severely autistic son (who doesn’t have diagnosed learning disabilities) on a few occasions, my son acknowledges he is thankful his autism doesn’t effect him the same as he can have a fairly normal existence.

@Kirstay

But isn't part of the diagnosis, by definition, impairment ?
By which I mean - if you're not experiencing significant impairment in everyday life you shouldn't meet the diagnostic threshold?

Not saying this is right by the way, but that's what's presently looked for...

Yes, it is, but who determines the significance of the impairment is my point. A clinician or neurotypical person would say my ex is impaired as his traits are such that he will struggle to ever maintain a romantic relationship or friendship. The friendships he does have are limited to people who are autistic themselves or who absolutely accept his autistic tendencies. He would have, and does, struggle with relationships with NT people.

However, this doesn’t bother him in the slightest, he doesn’t care much for friendship and is happier in his own company where he can pursue his interests without being expected to do ‘relationship’ things (his words!) So from his perspective, this is not an impairment but would be from the perspective of a psychologist or NT person.

Exactly. "Significant impairment" in day to day functioning is the threshold for diagnosis, across the various different diagnostic criteria. Without this threshold being met someone doesn't meet the threshold for diagnosis, and if PP is claiming both her son and ex-husband don't meet this threshold then by definition they have both been misdiagnosed, which seems highly unlikely given the rigorous diagnosis process involving multiple doctors and specialists.

However, someone having reasonable adjustments in place to their environment and their support needs met meaning that they are no longer suffering a significant impairment day to day doesn't mean those needs have ceased to exist and they are no longer autistic. That would be like saying "see, this human is well fed and not starving therefore humans do not need food to live after all!"

You take the support away again or force the autistic person into unmanageable environments again and the same collapse would happen again, because the support need was there all along. It was merely met for a time. Just like if we empty all supermarket shelves for a few weeks it will become very apparent that humand do still need food, being well-fed for a time doesn't take this need away, and that they will have quite an extreme reaction if that does happen because it is a need, not a want.

Some people still seem to be incapable of understand this though, apparently.

@RedToothBrush you are describing what happened to me and so, so many autistic female friends of mine. It is heartbreaking hat this is still happening now, decades later. I wish I could take my children and go and live on another planet sometimes. The realisation that nothing has been learned since I was a child fills me with dread. Nothing has improved, and my naive idea that they'd grow up in a society that wouldn't subject them to this constant violation of their basic legal rights and callous dismissal of their disabilities and appreciation of their strengths was an optimistic fiction I imagined. They will be subjected to this same discrimination and deliberate ignorance and prejudice exhibited through much of this thread. It is shameful that this continues, decades later with people spouting nonsense thoroughly disproved by all credible research.

My ex and DS only saw two professionals, a clinical psychologist and speech and language therapist. They also spoke to school, work and did family questionnaires. This was private diagnosis, not the NHS, so it’s inaccurate to say that to be diagnosed you need to have met multiple specialists and doctors.

too many parents don’t expect their children to participate in everyday life because of SEN, rather than teaching their children ways to adapt, cope and mingle with society.

It’s not about not expecting to, it’s about compromising the utmost expectations to fit in with societal norms and understanding that autism is a social/communication disability that completely contradicts this expectation. To make children (deemed ‘high functioning’ in particular) adapt is just another word for masking - which has been proven beyond doubt to eventually cause autistic burnout or worse, leads to abusing alcohol/drugs or leading a deviant lifestyle to cope. It’s a very thin line to tow, and takes a huge amount of physical and mental effort for an autistic person to fit in.

The biggest way those considered ‘high functioning’ are let down is this pretence by those meant to be supporting them the most is that they’ll manage fine if they can cope with school/work. But there is less and less of a safety net these days for adults without global delays as they get older. Like examples given here, some will have had an older family member who never married or left home, trundling along with parents until they died, then living a quiet single life until they themselves passed away. Others got married, and obviously in the past it was much rarer to get divorced. Autism even in those with lower needs tends to become more difficult to mask as you reach middle age, but people in marriages (men in particular) tended to find the traditional social set up worked more in their favour - men working and not having to apply themselves to home expectations meant much of the self care issues wouldn’t become apparent until their spouse died.

In recent years there has been many women (like myself) who has a partner who becomes less able to meet self/home care needs as they get older because more and more of their energy is put into other slots (such as working), but we no longer are expected to ‘stick with it’. I have seen countless men (many undiagnosed but with typical ASD traits) approaching 40ish, who’s partners can no longer cope slowly becoming their other half’s carer as they lose more executive functioning skills, end up moving back home or end up living in less than ideal situations because despite being highly intelligent or managing ok in very select, high routine environments like school or work, many people with autism need constant and lifelong support in order not to burnout.

And just to add, my ex would absolutely believe he’s not impaired by his autism. He is very very much in denial. I’ve tried a couple of interventions for the sake of our children but it’s certainly not going to end well. I’d sooner be seen as patronising that naive though.

Well autism by its nature has to effect daily life...

When did you initially flag concerns about your child?

My son was diagnosed at 2 - he is high needs autistic and attends a special school part time at 5 years old.

I'm not sure who would be saying this child is higher needs and needs immediate diagnosis. I guess in the cases it's usually raised young with the HV. It was very obvious my son was missing milestones.

Other than getting the specialist school place I'm not sure how much changes when you have the diagnosis though...

Recognise this in both my DD (now back at college after dropping out of 6th form due to post-GCSE/Covid burnout) and, with the benefit of hindsight, myself. I was diagnosed as having ME/CFS and had a year out at university - I now realise it was autistic burn out. A diagnosis back in my teens would have been hugely helpful in understanding the emotional dysregulation that hampered my life right into my thirties. (I’ve only been informally diagnosed by my children’s clinicians and have not decided whether, in my fifties, there is any point in the cost/official report 🤷🏻‍♀️).

It is determined by the professionals at his multidisciplinary meeting.

As you've just outlined he will struggle to form and maintain relationships.

There are lots of factors that come into play but these deficits have a significant impact on daily living. Maybe he displayed a lack of emotional reciprocity, maybe his daily or weekly routines did not leave space for other people and he had catastrophic emotional outbursts if his routines were interrupted, maybe he has some really specific, restrictive interests that inhibit his ability to prioritise relationships, maybe he couldn't identify the value in friendships and relationships.

The professionals that review his case all discuss clinical deficits and look at the evidence for how this impacts daily living.

In the example you gave, he wouldn't perceive those deficits as he has accommodated himself by self isolation or restricting those around him to those who share common ground.

The professionals have to consider what life would be like if these accomodations were removed and that would cause significant difficulties and distress.

These issues are significant by nature of their daily occurrence.

My dd is on the waiting list. She’s 11. We’ve been told she’ll wait likely 3 years. She’s absolutely terrified of going to high school, has social anxiety and struggles with friendships and is very unhappy. She can’t tie her laces, she’s behind academically.

She’s already going to have to wait 3 years. I don’t even know what additional support high school will give her. Should she really have to wait even longer?

Absolutely this. My DD has been out of school and unable to access education now for nearly four years. The autism service diagnosed and discharged - nothing available there. She has ASD, OCD and PTSD - waited over a year for assessment by CAMHS, another year being shuffled between the waiting lists for different tiers, and another 18 months to be allocated a therapist. She should be doing her GCSEs this year.

This is interesting. I'm on the waiting list for assessment having 'passed' the triage, I also was diagnosed with CFS/ME in my teens, did a lot worse than expected at GCSEs and never completed A Levels.

It was one of the people working with us to help DS who suggested I be referred for assessment, partly because I missed a lot of signs with DS as I didn't think they were odd because I'm the same.

Totally that's my big fear at the moment.
That undiagnosed teen will eventually explode. Meanwhile he needs to consent to the assembly and doesn't want it.

That is a complicated one. I have CFS/ME and have done for 15 years. It is a physical thing and although autistic burnout can make the ME worse, the ME has physical effects in terms of extreme pain etc and viruses causing relapses that make it clear they are two different issues but each often exacerbating the other.

What is very interesting is that research shows that living with high levels of cortisol (caused by stress) in your body for prolonged periods hugely increases the likelihood of developing autoimmune conditions like ME. Nobody really understand why set because there has been such insufficient funding into ME for decades (until lots of doctors started to suffer Long Covid aka Covid-induced ME, and now suddenly it is being taken more seriously). However it appears the autistic people due to being insufficiently supported to have their needs met obviously develop hogh levels of anxiety from having to try to function in inappropriate environments and therefore this predisposes them to a much higher prevalence of autoimmune conditions like ME.

It’s only through observing the acute physical impact of stress, depression, burn out that I now realise i was misdiagnosed (it was the newly trending illness when I was at uni). MY DSis was actually diagnosed with ADHD years before but because I was bookish/introvert/intelligent (but also underperformed in GCSEs) no-one considered whether I was on the spectrum. Girls with ASD/ADHD was not the in-thing in the 80s/90s.

It’s only now I realise what it was and why I’ve had recurrences at stressful periods of my life. For decades I thought I was weak and useless, now I realise I just operate differently and had accommodations been made I could have avoided the burnout/manage recovery more easily.

Am slightly buoyed by the fact that my kids colleges and all the unis I’ve attended or visited with the kids have excellent support for ND people…. IF you have a diagnosis. We only have ours as we went privately (after a 3-5 year wait for ASD and ADHD respectively).

So I may have had ME after all, but perhaps complicated by undiagnosed AuDHD? Or even triggered, to some extent, by it? I definitely, and both my children, experience acute, sustained anxiety. Hysterical out bursts/ extreme emotional dysregulation in extreme stress situations seem to be a family trait - my poor DH sometimes has to deal with several of us flipping out at the same time and gets fed up with the ‘I feel ill’ pleas when we genuinely feel we’ve been hit by a truck in terms of body aches and fatigue :(

I recently found out that a lot of women only find they are autistic when they hit perimenopause and menopause. They can be more sensitive to the hormone changes and it's yet another thing that can contribute to a burnout in addition to life pressures around that age.

It's shocking there's so little awareness of any of this.

@RedToothBrush I think I am going to do a bit of research on this as just been through meno and been struggling more than usual with life stresses. I thought maybe I had just reached the end of my tether, but am wondering now whether the hormone aspect is why I am more observably ADHD (in particular, the anxious over talking especially). Perhaps I will go for that diagnosis after all in the hope that it might help a good therapist support me through what I thought was just another bout of depression/being weak in the face of life’s stresses! My DD now has a fabulous therapist who specialises in working with ASD/ADHD people, and his understanding of the relationship between her diagnosis and what anxiety means/how it impacts her has been so very very helpful in getting her to engage with therapy for the first time. He doesn’t compartmentalise but is helping her understand how it is all interlinked.

Have you gone down the HRT route? Can you? It's not for everyone but if you are struggling it may be you are having a greater reaction to the hormone fluxations. It may well be ADHD linked but apparently it's a sensitivity issue so symptoms are more common. Increased anxiety is definitely one symptom that is a possibility in this situation.

Thanks @RedToothBrush recently started HRT, but am now wondering whether it needs a review as I really don’t feel better… and may in fact feel worse! (Sorry Op to derail thread.)

Nor mine! We had to go private and waiting 2.5 years for nhs

On the basis of your deeply flawed argument, every parent would want their child at the top of the waiting list. It doesn't work like that.

This is so true. 15 years or so of masking made my child severely mentally ill. She looks 'normal' to other people. People have no idea the toll that these undiagnosed years have had on her mental health. She's covered in self harm scars and has severe trauma from holding it together to attend school every day. Don't judge others situations from the outside. You have no idea how autism affects other people unless you are living their life. We paid privately for her assessment as the wait was estimated to be 3 years in our area.

I think the op is referring to the fact her son sounds like he needs a specialist provision or at least a 121 in school and for that you need an ehcp which is easier to get with a diagnosis. It doesn't sound safe her ds being in a mainstream school so it is a huge priority. I've been told by professionals in my area there's parent pushing for a diagnosis simply because they want to claim for a child. So on this basis I do understand what the op is getting at. She's not saying her son is a priority over other struggling children but his safety and education are very important. He should have the same opportunities as a NT child and at the minute he hasn't. I would push and even write to your local MP op. Good luck