To ask questions about autism.

[coodawoodashooda]

About 10 years ago i was in a meeting about autism. The leader said something like, 'if the child could......... then they didnt have autism. What was the quality that was being referred to? Was it empathy? I cant remember and for various personal reasons id really like to know.

@coodawoodashooda

For those of you with an adult diagnosis, what do you feel better about since being diagnosed?

At first I was elated - I had an answer, I wasn't broken, I was different.

Then for some time I was sad: I wouldn't change and why, why had this been missed when I was a child? Why had I suffered so unnecessarily for so long? Why didn't people know about autism in girls and women?

Then I adjusted. I've been open about it at work where I had accommodations like a fixed desk in a hotdesking office, and I've worked hard at forgiving myself for the millions of fuck ups in my life.

It's given me the gift of understanding. I like myself now. I love myself. Not in a creepy narcissistic way but in a sincere "I deserve health, happiness" sort of way, I know that I am not a failure. I just literally can't do things that you lot can.

If you'd told me in my teens or 20s when I was suicidal from it all that I could be here, I wouldn't have believed you.

This is probably why I'm so frustrated with your repeated suggestions that therapy is just as good as a diagnosis - it isn't. I'm not looking for validation as a pp said, what bollocks.

The thing is, you can't therapise away the problems where the actual problem is "your body and brain are different". It is actually quite damaging instead and I wasted a lot of time on it and then hating myself for failing it.

@coodawoodashooda

For those of you with an adult diagnosis, what do you feel better about since being diagnosed?

I answered this yesterday and wholeheartedly agree with everything @vanishun has said. However judging by the way your posts are going I think you are only looking for justification to deny your child a proper assessment and that's not ok. Nobody is going to back that OP, nobody. A diagnosis in adulthood changed my peace I had made with my entire past, I had to rework through every bit of hurt and every emotion and if you have the opportunity to prevent your child from even that, aside from intervention then you need to take it. Intervention by the way, even the most minor of adjustments can and do have a massive impact on my life. It isn't something you have the right to refuse someone if they need it.

Health care professionals - shock, horror - even doctors can be abysmal. I was told bluntly that DS1 was autistic but that I was lucky because 'he was one of the quiet ones' (selectively mute), that under no circumstances should I seek diagnosis because he would use it as an excuse and that 'mothers' were the most important resource.

I have met many mothers on the Freedom Program whose kids who might have SEND that are refused referral because of DV. DV is known to increase with vulnerability - pregnancy, or physical or mental or developmental issues relating to the mother or children. DV complicates things and makes things worse but it doesn't remove the underlying reality. DV does not cause autism. What behaviours are the school seeing that you think are a result of DV?

If I were you I would bracket the DV and think back over your child's life and development history. Maybe look at the CAST questionnaire.

psychology-tools.com/test/cast

However judging by the way your posts are going I think you are only looking for justification to deny your child a proper assessment and that's not ok. it IS absolutely ok not to assess a survivor of domestic violence who is suffering from PTSD. I’m fact it’s might be very sensible but it will be harder for OP to judge what is best for her child if people try to shame her into doing what they think is right. Allowing her to explore the situation is a far better idea, if you actually care about what IS best for this child.

it IS absolutely ok not to assess a survivor of domestic violence who is suffering from PTSD.

Ah come on now, that's not what I am saying at all. In fact I previously said...

I would echo the poster who said to speak to your GP. If your child isn't autistic he won't meet the criteria for diagnosis, in fact it's unlikely he would even face a full assessment as the initial findings from school; home and the early developmental questionnaire would rule it out anyway. He could have PTSD and/or ASD though, and there are other possibilities too. GP first call.

However not having an assessment because you fear the 'label' is not ok. Not having it done because you think it's a choice someone should make in adulthood is ridiculous.

I don't think the diagnosis is worth anything any more, if means too many different things to too many people. People who are able to live independently, have families, jobs etc are completely different to those who can't. Getting the help and support people need is more important than any label.

Can’t help on the phase. But re diagnosis - A diagnosis gives child (and parents) an understanding of what, why and how in regards to certain behaviours. Before DDs diagnosis we were at our wits end because ‘normal way’ of bringing up your child just wasn’t working for us. And things we did that you ‘would normally’ be able to do with a child was frustrating painful. And we didn’t understand why (think simple stuff like going to the shops). DD was also at her wits end in frustration. Neither of us understood the other. However, a diagnosis has given us all a new lease of life. We understand DD now and life is more manageable.
(And yea I feel, and will do forever, guilty for not ‘understanding’ her earlier. But of course I couldn’t understand what I didn’t know. The diagnosis has literally been a life saver).

I think my struggle is mostly because i think 'asd' is being bandied around because there is so little under about how we were persecuted by my xh. My kids still regularly experience this. The fear and heightened escalation of fear, the desperate feeling of trying to please him etc etc. I also am not saying a diagnosis should wait til adulthood but certainly early secondary school years. I think. So much has been done to my child against his will. I want him to be active and knowingly part of the process.

I dont feel like the normal way of bringing him up isn't working. I feel that the, 'come down' from coping with being with his weird controlling bastard father sets him on edge and that he is exhausted from being in a constant state of trying to please his father and gain his love so that he will be nice.

@Justrealised

I don't think the diagnosis is worth anything any more, if means too many different things to too many people. People who are able to live independently, have families, jobs etc are completely different to those who can't. Getting the help and support people need is more important than any label.

You don't get the help without the diagnosis in many many circumstances. I had to wait until I was over 40 before I was able to ask for reasonable adjustments. I had to wait all those years. The diagnosis is worth more then gold to me, and to my children who also have benefited from extra help and adjustments where needed. Please don't minimise that.

@coodawoodashooda

I think my struggle is mostly because i think 'asd' is being bandied around because there is so little under about how we were persecuted by my xh. My kids still regularly experience this. The fear and heightened escalation of fear, the desperate feeling of trying to please him etc etc. I also am not saying a diagnosis should wait til adulthood but certainly early secondary school years. I think. So much has been done to my child against his will. I want him to be active and knowingly part of the process.

Honestly, the assessment process is so thorough. It isn't a case of 'social difficulties' = ASD or 'differences=ASD'. It's about observing behaviours that are subtle and then putting them in a context. For example, with one of the assessment tasks, DD2 needed to ask for help from the assessor. The situation had been manufactured by the assessor, but watching DD2, I could see her weighing up her options. She either had to not finish the task, or she had to ask for help from the assessor. She obviously decided that not finishing the task was worse, but her difficulty with the decision was obvious.

They don't assess alone, either. We had two Specialist SALTs and a clinical psychologist.

A diagnosis does help. DD1 has SN. She's always been to special school. Her behaviour has seemed to baffle the teachers, until I raised the possibility of ASD. Now they've seen her in a whole new light and her behaviour makes sense to them.

@coodawoodashooda

I think my struggle is mostly because i think 'asd' is being bandied around because there is so little under about how we were persecuted by my xh. My kids still regularly experience this. The fear and heightened escalation of fear, the desperate feeling of trying to please him etc etc. I also am not saying a diagnosis should wait til adulthood but certainly early secondary school years. I think. So much has been done to my child against his will. I want him to be active and knowingly part of the process.

Are you seeking a PTSD diagnosis then?

Im waiting to hear back from the gp. I trust her. So far.

A diagnosis or ‘label’ isn’t a negative thing. It’s a positive. It’s better than being labelled naughty or the class clown or being expelled, because that’s what used to happen. See it as a positive thing as it can access support. It’s not something I would wait til secondary school for as if your child has asd, you’ll want that support in place already.

And like pp said, if he’s not autistic he won’t get a diagnosis. Maybe it will open other kinds of support he needs.

Our school said that parents often refused to hear it when they mentioned it, they didn’t want their child labelled. I never had an issue with it, yes I was upset about it, but I never saw it as a negative thing. If it was diabetes or asthma then no one would question it, yet somehow because we can’t ‘see’ autism (so to speak) it’s somehow different.

Also it was only when I had my next child I realised something wasn’t quite right.

When my ds had his assessments which as I said included assessment for autism he was very much the center of the process and a knowing participant.

When we got the results they were explained firstly to him and then later to us as parents.

This wasn't a process that was just done to him.

For DD1 it's been really empowering. She knows now, that there is a reason she feels the way she does. She understands that her feelings of complete exhaustion after school arise from the extra effort it takes her to fit in at school. She is happy that she has her very small group of friends and she doesn't feel the need to try and be friends with everyone.

It's not all plain sailing, but it has given her confidence in herself.

@FayeFayeFayeFayeFaye

A diagnosis or ‘label’ isn’t a negative thing. It’s a positive. It’s better than being labelled naughty or the class clown or being expelled, because that’s what used to happen. See it as a positive thing as it can access support. It’s not something I would wait til secondary school for as if your child has asd, you’ll want that support in place already.

And like pp said, if he’s not autistic he won’t get a diagnosis. Maybe it will open other kinds of support he needs.

Our school said that parents often refused to hear it when they mentioned it, they didn’t want their child labelled. I never had an issue with it, yes I was upset about it, but I never saw it as a negative thing. If it was diabetes or asthma then no one would question it, yet somehow because we can’t ‘see’ autism (so to speak) it’s somehow different.

Also it was only when I had my next child I realised something wasn’t quite right.

It's difficult. Hearing that your child has a life long condition that is going to affect every part of their lives, is a difficult thing to hear. It is not similar to diabetes, which can be managed by medication and diet. Autism requires months-years of therapy to improve aspects of their quality of life.

DS (13) has been assessed as HFASD. For him the process has been empowering. He says it makes sense.

We weren't keen on labelling him, we didn't want him to find out and restrict himself to a set of traits but its not really like that. When he went through the assessment he met different HCPs who understood him and asked questions about things he thought nobody else knew about or could see in him. Masking is exhausting, it was a huge relief for him to let go of that in those assessment meetings too, it made him feel understood, accepted and valued.

And he has boatloads of empathy, he's like a heartstring when it comes to other people. He just doesn't broadcast it in the same way. The empathy thing ie a red herring.

For those who say its a spectrum that 'everyone is on somewhere' (eg the useless HT at DS last school who should know better 🙄), or that therapy can make a difference (when it really can't), try and look at it instead as some people are PCs, some people are Mac. Or Linux.

It's difficult. Hearing that your child has a life long condition that is going to affect every part of their lives, is a difficult thing to hear.

This is where parents need to step up and out their children first though. Yes it's difficult but ultimately denying your child a diagnosis or at the very least an assessment because its difficult to face as a parent isn't doing the best for the child.

It is not similar to diabetes, which can be managed by medication and diet. Autism requires months-years of therapy to improve aspects of their quality of life.

Therapy? Therapy doesn't change autism.

Please stop saying everyone is on the autistic spectrum. That is entirely untrue.

Yes, a certain form of therapy does change the impact (not the fact) of autism. It is called ABA.

@theDudesmummy

Yes, a certain form of therapy does change the impact (not the fact) of autism. It is called ABA.

ABA is horrific. It's not therapy, it's fucking abuse.

The education system (I'm assuming you're UK) has very little funding available for SEN. Be prepared to fight to have his needs met in mainstream, or to get him into a specialist provision. The special provision I'm looking at is for average/above average attainments with class sizes of 6 and a team around the child. My son could thrive there but it won't be easy. That takes time, and a certain amount of fight, it can take years. Starting the process in secondary school has obvious disadvantages.

Another point is that if your son has ASD and is undiagnosed + not having his needs met in school, autistic burnout is not uncommon at transition to secondary school and at other points through secondary. It can appear like a 'sudden' breakdown, but it isn't really sudden but the result of years of masking. It's not pleasant, synonym like a depressive breakdown, and takes time to recover from, I wish I'd spotted this sooner for my child.
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Finally your child may get to his teen years, need help, but not recognise this himself and refuse to engage with assessment. A difficult position for you as a parent, and not uncommon.

Unmet needs lead to problems, dealing with this in the teenage years with puberty is unlikely to be in anyway easier - and there is precious little support if things do go 'bang'. Not looking to be doom and gloom but most people looking to get diagnosed as teens is because there are significant issues that need attention, if I could compare it to something it would be elective vs emergency c section, same operation but one is much more stressful...

Youve all been amazingly helpful. Thank you. So is it the process of the diagnosis that provides the clarity that gives so much comfort, or is it the support afterwards? Remember, im thinking out loud, not trying to upset anyone.