ASD vs AD. Aibu to think they just want to blame me?

[Afflictus]

Hi, I have posted previously about 9yo DD who for the last three years has had violent meltdowns daily, was/is suicidal and lots of other issues.

I was open minded about what was causing this in the beginning but after several posters suggesting it on my threads, and having met other parents with HFA girls who suggested my DD sounds very much like their DC, I have seriously considered ASD as a possibility. I have read around the subject and decided it was at least worth pushing for an assessment.

After several years of asking for help and being denied, the school got involved and we were finally accepted to CAMHS and have other professionals like a social worker. A couple of these professionals who have worked closely with DD have agreed that there appears to be an underlying condition.

We were given 8 sessions with a CAMHS worker, the first two being spent going over our story to date, one session with DD and one session with me. Initially they wanted to spend most of the sessions with me so I'm assuming they think it's a parenting issue.

I have been honest in saying that my relationship with DD is severely fractured but this is in response to her difficult behaviour and I don't feel it's the other way round as I was very close to her when these problems initially manifested. The CAMHS worker was initially saying that he thought my DD was mimicking the abusive behaviour she witnessed from XH and that we had an abuser/abusee relationship. This isn't something I agree with.

At the last session, he went through the Coventry criteria with me and I felt that DD ticked boxes in both categories, ie. it could be either. At the end he said that 'we are both in agreement that she presents more as an attachment disorder'. I don't actually agree, I felt is was 50/50 at most and much of the criteria centres around presentation in boys (if I've understood correctly about presentation often being different for girls) but I struggle to challenge professionals.

I didn't really understand attachment disorder so read up when I got home and I am very upset to find that it's caused by insufficient attachment to primary caregiver, abuse or trauma before the age of 3. Have I understood this right? If so, it really doesn't fit as I was a totally devoted mother and did absolutely everything for DD spending her first 4 years as a SAHM. XH was abusive but she didn't see much of this as we didn't live together until she was older.

In any event, I still feel it's worth at least ruling out ASD via assessment but they seem hell bent on finding fault with my parenting. I have two other DC with no issues except one has dyslexia and the other very likely dyspraxia which are apparently associated conditions. ASD also runs in my family. DD also has hypermobility which I've read is another associated condition.

What do I do when they simply do not take my concerns or opinion seriously? I am so sick and tired of being blamed for this . Or do they possibly have a point? Anyone any experience on this and can advise please?

AD is the diagnosis du jour from camhs at the moment, and the Coventry grid is so ambiguous and open to interpretation that it's barely more useful than tarot cards. It also ignores many things that are features of ASD and categorises them as AD, which is unhelpful at best and downright bloody harmful at worst.

Too many people are blamed for their child's autism, and chaotic lifestyle blamed, when in many cases (including mine) the chaos stems from the autism in the first place and needs various strategies (that aren't covered in the bloody incredible years) to get back onto an even keel.

We had an awful time with camhs and were discharged at a point when they began to feel threatening. In many areas they are not fit for purpose, have little to no understanding of ASD, and if you do get a diagnosis, even if the child is suicidal they tell you it's normal for autism and discharge you anyway.

Sorry, not a helpful post, but YANBU at all

Hellokittycat I had similar with my youngest, he was diagnosed with Asperger's by the clinical psychologist at CAHMS after numerous consultations with both my son and myself. we then saw the consultant psychologist for 15 minutes who explained that Aspergers was generally caused by single mothers ( and he knew as he had written a book on the topic) and that my son did not have Asperger's but was simply"too independent" because of the way I had brought him up!

Kleinzeit I liked your suggestion better!

The mothers cause Autism theory has largely been debunked, I thought? It is more like person is born and has Autism and experiences the world differently to other people around them who do not have Autism and then parenting is difficult? That was my understanding.

People write books on all sorts of things. Having written a book on a theory does not make the theory correct or helpful.

I have been honest in saying that my relationship with DD is severely fractured but this is in response to her difficult behaviour and I don't feel it's the other way round

Why are you so sure about this? Perhaps your daughter feels otherwise and has told them in her session.

OP, I recently attended an excellent course for parents of fairly recently diagnosed autistic girls. Virtually everyone there bar us had fought and fought for years for their ASD diagnoses and some were near broken by it. And in this group were at least three women who worked with kids with ASD, at specialist schools etc! It was jaw dropping. Absolutely can believe all these accounts of how informed some practitioners are about female autism.

Ill-informed, rather.

OP obviously none of us can tell whether it is ASD or AD or whether or not the CAMHS is "hellbent on blaming.you".

I would suggest that you try to mov away from the fixation on the label/dx and move towards beneficial treatment for your dd.

I have been on the receiving end of parental blame (dd was diagnosed with ASD aged 10) and it was extremely hard to hear. Looking back however I do feel I enabled some of her behaviours due to my own parenting insecurities. I am bot in any way saying you have any issues as a parent, but I do know it is often very rare for a parent to be able to acknowledge their own deficiencies. Parents of dc who are removed due to severe trauma/abuse/neglect often fail to see any issue and feel there is a conspiracy against them. I know my own DM swears blind that me and my two siblings were "completely unaffected" by my DP's long and cery acrimonious divorce. I'm not sure if it is a defence mechanism or what, but it is common.

Don't ever read up on conditions on the internet! It just makes your expectations and reality 100x worse.

I hope your daughter gets the help she needs, things can never be easy x

The thing is OP you just need to do what's best by your daughter. And if that means a dx of AD and parenting classes then you need to engage fully with them. If you engage fully and nothing changes then it's time for a second opinion. But tbh your just coming across as it's your dd with the problem and that in itself is bad parenting.

Don't want to hijack, but can anyone suggest any book titles written by credible authors on AD?

I have 2 dds with ASD, my youngest (5yo) was diagnosed last week. I fought long and hard for the first diagnosis, my parenting was criticised, all the the things you hear happening to parents on this journey happened to us. Once I got dd in front of someone who truly understood autism, we were basically told within an hour. Then she was diagnosed.

With dd4, diagnosis was straight forward. I battled the go for referral, mapping dds behaviour to the triad of impairments, and did the same for 3di. ADOS reflected my input into 3di. I think I'm lucky to have a cahms that while far from perfect, has a huge understanding of ASD in girls.

Im not all that familiar with AD, apart from knowing that it 'looks' similar to ASD, but surely having dc that don't face issues must be a huge factor. I also have two NT dds, and constantly use them as points for reference.

What was the qualification of your cahms worker?

I'm not sure about others, but what is useful about a diagnosis is the removal of doubt. It meant I could truly try to understand my dds through an 'autistic' lens, rather second guess everything I am doing.

It wasnt anything to do with my parenting, because as soon as dd received asd support in school everything changed.

Before she had to leave groups as she was a bit hectic, now she has done a solo in church, joined youth club and become a prefect and we have only had a diagnosis 6 months. Life is perfect and thank god for the NHS and not cahms.

The thing is OP you just need to do what's best by your daughter.

Getting the right diagnosis - as in, diagnosis by the experts - is doing what's best by her DD. Unfortunately a CAMHS worker with the Coventry grid seems to have been appointed as gatekeeper to the experts and he's trying to divert her DD away from a full multi-disciplinary assessment / differential diagnosis. So she's likely to need some diplomacy and a lot of persistence to get the job done properly.

And if that means a dx of AD and parenting classes then you need to engage fully with them.

I did "Incredible Years" classes at the local children's hospital and it was excellent - but only a couple of years after DS was diagnosed with an ASC so I knew how to adapt it to his abilities. If I'd been on the course without knowing about his profound communication issues, anxieties, rigidities etc revealed in his ASC assessments then my expectations would have been all wrong and I would have got a lot less benefit from it. And so would DS.

@kleinzeit maybe the OP has got the right diagnosis and the key problem is she won't accept it. Camhs workers aren't infallible but they aren't all shite and wrong either.

maybe the OP has got the right diagnosis

From whom? A CAMHS worker can't diagnose. No-one knows if he's right or not. Surely the OP's DD has the right to a full diagnosis.

Getting the right diagnosis - as in, diagnosis by the experts - is doing what's best by her DD.

This is not necessarily the case. Getting a diagnosis by the expert is not necessarily what is best by her DD.

In my opinion the single most useful thing for a child in this situation is to have a team around the child who work collaboratively. This includes the parents, the staff at the child's school, the staff from CAMHS and sometimes social services. When the parent feels attacked by the professional or the professional feels attacked by the parent the child suffers. This is also true of when the professionals pass the family from one organisation to another whilst offering assessment after assessment and no actual support.

The bloke projecting his own issues with his family onto the family he is trying to support sounds unprofessional as does the bloke who claims poor parenting causes autism on the basis that he wrote a book on the topic

I agree it may be that they have got the diagnosis wrong or maybe it is dual diagnosis.

If you accept AD, will they agree to assess for ASD too? Could your GP refer to a different t CAMHS?

Have you tried approaching the National Autism Society for advice?

And those saying meet her needs and a diagnosis is not necessary are talking shit. With cuts left right and centre,it can be painfully difficult to access support WITH a diagnosis. Without one, you would have e little it no chance. It also enables the child to understand that their difficulties are caused by a tangible 'thing' and not their fault.

I am not talking shit.

Sometimes the tangible thing is not located in the individual who becomes the centre of the diagnostic conundrum. Sometimes the tangible thing is not being named and it is easier for the parents to go on a quest for a diagnosis for the child.

That support is available without a diagnosis is a question of politics not a question about what is best for the child in the situation. That the current political situation damages children and families does not make it follow that a quest for a diagnosis is the appropriate route for anyone.

*that support is not available without a diagnosis.

@erinaceus

Obviously you see yourself as a wonderful sociologist and pseudo-psychologist. Heaven help us if you are working in CAMHS.
Without a diagnosis is it very hard to get support. It is hard with a diagnosis but harder without. Your post conveys a sense of superiority and academia. I have a PhD. Am I permitted to have an opinion like you are?

And as a parent in the system I think the correct diagnosis is invaluable. As leverage, as an explanation and for acceptance. Our children are labelled no matter whether there is a diagnosis or not. Mine was referred to as 'horrendous' and 'horrible'. Another kid with very obvious SN was called The Beast. His parents didn't want to diagnose him because they didn't want him labelled. He is currently being crucified at secondary school as he slips under the radar.

A diagnosis is nothing to be ashamed of. I think it is important to get this message out into the open. It explains and qualifies behaviour and most importantly gives a set of guidelines and laws that schools must adhere to. It leads to ideas and ways to support the child. Without the protection of a diagnosis our children are even more vulnerable to exclusion or failure than they are now.

When I explained to my child why they do the things they do, and what the name of their need is, they were so relieved. In their words "I used to think I was bad and stupid. Now I know I just have different needs and I am good and clever".

Which they are. And thanks to mine and their persistence and tenacity they finished primary with one the highest SATS results. Pre-diagnosis they were at the bottom of the class.

you see yourself as a wonderful sociologist and pseudo-psychologist.

This is not the case.