Is anyone the parent of a child with asd and not seeking a diagnosis?

[coodawoodashooda]

Not looking for a bun fight. Just trying to sort out my thinking. Anyone with any of their own insight that they'd be willing to share?

Haven’t read the full thread but just to put my own 2 pence worth in…

I have suspected Dd has ASD since she was little, something was always ‘a little off’ but the results were usually positive (very good and early speaker, high reading level etc) so it was never a ‘problem’ until one day it was a BIG problem.
Shes now 11 with MH issues, struggling with the transition to high school and on a huge waiting list to be assessed so she can access the proper help.

So, I understand why you haven’t jumped on the chance to assess him but my advice is to do it now so you’re ahead of the game in case one day it all turns and you find that the help you desperately need NOW is years away.

(I also say that as someone in her 30s seeking an ADHD diagnosis for herself)

She doesn’t have to tell anyone in her class.

And she might not be devastated. She might be relieved to have an explanation of why she feels “different “.

You say she’d be singled out in her class. Why do you think that? Are you sure that there are no other neurodiverse kids in her class? That’s surprising, unless its a very small class.

I can see why you might not. Everyone seems desperate to give children labels nowadays and I can see why someone may not want to.

@Haffiana

That sounds about right. The school tried to refer my child on from an initial EP assessment when they were 5. I said no as I honestly just thought they were being OTT. That was, of course, because they seemed "normal" to me because they were like me and I am "normal".

6 years on when I realised they were certainly autistic I did a lot of research about it trying to decide if to pursue a diagnosis and a lot of it... sounded very familiar and I realised the flaw in my logic.

As I said earlier I still decided against pursuing diagnosis.

I think I can get him all of this professional understanding without the label.

Wonersh, rather than think.

I know what you’re saying, but for us having a suspicion that this is the case also gives us all a better understanding of why DS is like he is. We can make exceptions for him because he struggles with certain things without needing to name it.

He and his GF both discuss the traits and events that have led us to suspect he would have been diagnosed with Asperger’s (when that was a thing.). She understands and hopefully she, or any future partners, will bear in mind that he doesn’t think about things the same way as most people, and they can work with that, diagnosis or not.

TBH once my XH (his dad) was told that he should consider getting a diagnosis, he used that as his get out of jail card and the marriage was essentially over. We’d been in counselling and he was told that he wasn’t suited to counselling because it relies on empathy and he didn’t appear to have any! Looking back I can see so many signs, but at the time I was banging my head against the wall trying to get him to see things from my POV!

Once ASD was a possibility he would use it whenever I asked him to get involved, help out, spend time with me and the DCs etc. It turned out he just wasn’t suited to family life, and that potential ‘label’ meant he could opt out because it made him uncomfortable. He is now much happier as a part time dad, and the DCs understand that he has some limitations on what they can expect from him, so nobody is disappointed!

I have ADHD. Diagnosed as an adult. I also know I have ASD. I know that as a child it would have been far less damaging to be 'labelled' as having ADHD/ASD then being labelled as I was as 'lazy, careless, scruffy, silly, immature, messy' my entire childhood was miserable not because I was those things but because every adult blamed me for not trying harder, being better. I could no more change them than fly. My mental health is irreparably damaged as a result and my life changed because of it. My children have ADHD and ASD... they are all those things too but I can say it's OK, well done for trying, I can clear up the mess without shouting because I know their executive function is delayed. I can help them be the best they can be and feel OK about being them. It's not a 'label' its an explanation and it helps us steer the boat through the rocky waters with a little bit of a map.

Say a teen whose parents had declined past opportunities for diagnosis got into trouble with the police. Let's say they assaulted someone after becoming over-stimulated. What would happen to them? I'm assuming that autism as a mitigating circumstance simply wouldn't wash.

If my teen assaulted someone as a result of autistic overstimulation (he wouldnt but for the sake of arguement ) then his autism would mean he would be classed as vulnerable. That would affect the way the police deal with him, how he was questioned, and who would be with him during questioning. It wouldn't stop him being charged or cautioned unless his disability was such that he was considered not competent (ie lacking in capacity). His autism might be considered a mitigating circumstance during sentencing if convicted, I guess depending on the exact circumstances.

If they assaulted someone seriously and you said 'it was autism that made me do it" then you may be sent to a secure mental hospital rather than prison. You might not think this was a better outcome. Especially if the time you would need to spend at the latter was open ended.

There will be certain things that will not be available to him without a diagnosis.
Whilst dd’s schools (primary and now secondary) have seen supportive, a diagnosis unlocks ‘level 2 of support’ if you like.

If your schools require a diagnosis to provide support then they are failing to follow the law.

Unfortunately they will use any excuse and ultimately it's hard to hold them accountable as they don't really receive a punishment for breaking the law.

Our council initially refused to assess DD for an EHCP because her school attendence was 100% they actually wrote that down which I was surprised by. As that has no relevance to the fact she needs extra support in fact it actually shows that even though she was always in school she was about 3/4 years behind her peers. She nosedived during the pandemic luckily the new school seems to be working 🤞

My 16 year old son has ASD which was diagnosed a year ago. He has had problems in school since about year 3 in primary school. We didn't see it then, just thought things would get better when he went to secondary school. They didn't get better, they got worse. He became more and more isolated and reluctant to go to school. When he was in year 8, I asked them to assess him for ASD - they laughed at me and told me I was making a fuss about nothing.

So we moved him in year 9. The new school were a lot more receptive, but the problems continued (even though he liked the new school a lot more) while we waited for assessment. He started having panic attacks and refusing school. Eventually, he was diagnosed last summer between year 10 and 11. He managed to do well in his GCSEs despite about 70% attendance, largely due to the support from the school and the excellent teachers.

He's now moved to a small independent school for sixth form because he just couldn't cope with being in a large comprehensive school any longer (and thankfully is a lot happier).
The last three or four years have been hugely stressful for us as a family. Dealing with his anxiety and school refusal, never knowing if we were doing the right thing for him or not.

I strongly feel that if someone had spotted it earlier, or if the original school had listened to me when I first suggested it, a lot of the problems would never have happened because he would have got support earlier.

Kids with ASD often function fine in primary school, then run into problems when they start secondary. Just because a child is OK now, doesn't mean they will continue to be fine.

Because of my experience, I would always recommend getting a diagnosis. It could avoid so many issues in the future.

Both my children have been functionally incapacitated by health conditions in a way which has significantly affected their day to day participation in education over the long term.

Neither received support or understanding from their schools whilst undiagnosed. One met the threshold for higher levels of intervention from CAMHS, but was still off-rolled by their Sixth Form, supported by the local authority. Whilst this was potentially unlawful they were too unwell to consider going to a panel with a disability discrimination claim within the 6 month period. This school didn't understand the difference between not having a condition and being undiagnosed, despite letters from clinicians and being sent the relevant SEND guidance. This child never met the SENCO.

The other child now has multiple diagnoses. The school they attend attempts to assert that they are 'fine in school' despite horrendous anxiety linked to ASD. However they are on the SEND register and some adjustments have been agreed.

The reality is, by secondary school, when problems for autistic children often dramatically increase, you have to fight for EVERYTHING. In practice, diagnoses, and the supportive health care professionals that can come with them, do make a difference to how kids are treated. The risk is if things get significantly more difficult, you may then sit on a waiting list for an assessment for 2 years + whilst your child's self esteem and confidence at school plummets.

@Lovelyricepudding
"If your schools require a diagnosis to provide support then they are failing to follow the law."

That's fine in theory, most parents are aware of that, but they are also aware that it doesn't work for many pupils in reality.

For example, how would you get education providers to present information to a child in a way they could understand it, without documented proof of that need?
Are you saying a parent's request is enough?

Say a child has slow processing speed. Which of these scenarios is most likely to to have school provide the support this child needs?

A. Parent, with no evidence, suspects their child may have slow processing speed, so asks school for their child to be seated at the front of the class, then all instructions to be delivered to child by teacher firstly gaining their attention by saying their name, then giving them a verbal and written sheet of one-step instructions for that lesson.

B. Parent sends school a comprehensive report undertaken by SaLT outlining which tests were used to determine processing speed, what the child's score was and the SaLT's professional recomendations based on their assessment, - child to be seated at the front of the class, then all instructions to be delivered to child by teacher firstly gaining their attention by saying their name, then giving them a verbal and written sheet of one-step instructions for that lesson.

As a person with Asperger's who wasn't diagnosed until middle age, I feel angry people who were diagnosed as children had lots of help and support, while I had nothing but emotional damage from being punished and blamed for the symptoms.
Apart from the main symptoms such as having bad executive functions, there are other things connected, such as being clumsy and being made to spend hours in handwriting classes and still being confused why no matter how hard I tried my writing still looked dumb. It made me less confident when taking exams, but if I'd had a diagnosis I could have had an excuse why my writing was bad.

Although as a person who wasn't diagnosed until middle age, now I attend social groups with younger people who have had lots of help and support, I feel bad that I'm judgemental towards they have so much support, while I had to do it all myself.
Maybe I'm a bit bitter and twisted, but when I had people laughing my quirks when younger, it forced me to try to act more normal, while I see them as not bothering to act what people see as normal and having more excuses to do less.
Then again, I wonder if I might have been able to be more successful in life if I'd been allowed to be myself more, so it's confusing.

Part of the reason for wanting our son diagnosed (or not if if that turned out to be the case) as his issues arose was based on the experiences of several wider family members who were diagnosed as adults. They had loving, supportive parents but felt that this didn’t stop the outside world being cruel and damaging their self esteem beyond repair. They felt different, were treated different and grew up thinking they were ‘abnormal’. Both were diagnosed during a mental health crisis and one had made several suicide attempts during their lifetime. They didn’t blame anyone but felt with hindsite (which I know is a wonderful thing) that knowing they were autistic would have hugely benefitted them growing up.

Some of the comments on this thread from people who have been diagnosed as adults have been really insightful, thank you for posting them.

Yes that's true. If somebody is a danger to the public, then they will still be taken away from the general public, but if they have mitigating circumstances that can be treated, then instead of a prison they might be taken to a secure hospital for medication.
Although at my social I attend after I was diagnosed in middle age, there's a young lad, and I don't want to sound over judgemental but putting it blunt, he often ruins the evening by going into a meltdown. Once we had just had meals served in a restaurant, and had to leave them because he didn't like the subject we were talking about, and started waving his knife and fork in his hands, scaring others.
As a person who has had a strict upbringing and had no excuses for not acting how society expects me to, I can't help being judgemental and wondering if he has been made to feel that he can have an excuse to act like that.

It's quite confusing when the spectrum is so wide. I have many problems with over stimulation and anxiety, but feel too embarrassed to act antisocial in public and wonder why some people feel it's OK. I know it can he stressful to put on a normality mask, and then I like to spend time on my own such as reading to relax, but I can still do it, as I think some people on the spectrum think too much of themselves than how their behaviour affects others. In my opinion people on the spectrum should be taught that they should also think of others, as I realised that I was spending too much only caring about myself.

We are not. I suspect myself and dh are also autistic well it's pretty obvious tbh.
But if dh and I were to have had a diagnosis, it would have been a negative thing imo to have one. When we work all over the world, I'm not sure all countries are as accepting of a diagnosis as others.

I also wonder if we'd have been refused to work in some jobs but would be under the guise of something else and self under the rug.
However we do have to work around a lot of things but have simply devised a lifestyle around autism instead of trying to force ourselves to live 'normal' lives. Still called odd but went into jobs that have others like us. We don't socialise at all outside of work because it's too much. We feel like we know exactly what we're doing with our one dc.
We also only have one dc as we wouldn't cope with more than one because we dedicate so much time to them. We will be raising them to know what we think and then it will be their choice hopefully as an adult when they can have the full consequences & benefits of a diagnosis put to them.

We have enough money not to worry too much though. School have mentioned it but again we've worked around it however they are very bright and at a private school with small classes so most of it is going ok so far. If there are any serious issues affecting dc or others who have to deal with dc we'd reconsider the benefits/consequences again then.

Swept under the rug*

I had someone harass me and the police refused to do anything because he has Autism and therefore, doesn't understand. We're not talking about someone who doesn't talk, needs supervision 24/7, etc. Thankfully when I spoke up at the group we met at, they did kick out. Several people had raised their concerns.

I didn't bother going to the police when a different person harassed me. When I raised my concerns at a different group, I was told it was "ok" because he has mental health problems.