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?

From whom? A CAMHS worker can't diagnose. No-one knows if he's right or not

Does CAMHS as an 'organization' operate differently across the UK? In our CAMHS (which is a regional centre) the 'workers' are all psychiatrists or clinical psychologists. You seem to suggest differently?

What is all this talk of "CAMHS workers "? They're usually psychologists and psychiatrists not people off the street!

Why is the OP committed to blaming her daughter and label her as being autistic? Why can't she accept that she may need to change her parenting style?

The naivety of posters here, thinking that having an ASD diagnosis is an unqualified positive thing would be laughable it wasn't so depressing.

Not necessarily at our CAhMS. Ed psych, SALT, OT, psychotherapists; along with clinical psych, psyciatrists.

A community pead discharged our dd saying her problems were only sibling rivalry with a bit of an inference that I was neurotic. This was the person working for cahms. I needed to be in front of an autism expert. Not everyone at cahms is an autism expert. We learnt the hard way....

Hasitcometo this,why dont you think an asd diagnosis is a positive thing

A diagnosis of attachment disorder can be very hard to hear, but please understand that nobody is questioning your love for your daughter.
It does sound as though you've been through a traumatic time with abusive ex, and this is likely to have impacted on both you and your daughter (you'd be amazed at what children pick up on, even if you think she didn't witness much abuse. The abuse will have affected your emotional wellbeing and therefore also probably affected your ability to support your daughter emotionally-- this is NOT your fault, of course.)
It's also worth pointing out that attachment difficulties don't always begin at age 3 or younger. The difficulties can begin at a later age, right up to teenage years, though in your case it sounds like the 'seeds' were sown some time ago but have taken some time to snowball and become apparent.

1. Don't blame yourself as the problem, see yourself as being the solution.
2. Listen to what the professionals are suggesting. It can't do any harm and may do a lot of good. They are trying to help you.
3. Keep an open mind about ASD by all means, but remember there is no 'cure' for ASD, it can be managed but it won't go away. Attachment relationships on the other hand can be rebuilt, though time is of the essence. In a situation where you are in doubt it makes sense to follow the attachment line of enquiry first.

(I am a psychologist-in-training, so thought I'm not qualified yet I do have some insight)

Because, amongst other things, it can - and is - used to pathologise the wishes and advocacy of those with that label (as posters have done on other threads), and be used to locate all the problems of a family or relationship dynamic onto the individual with the diagnosis (as the OP is doing on this thread).

Best thing that ever happened to us. My dd loves having a diagnosis. It was so positive and life changing. It has been like a magic wand for my family.

Why is the OP committed to blaming her daughter and label her as being autistic? Why can't she accept that she may need to change her parenting style?

The naivety of posters here, thinking that having an ASD diagnosis is an unqualified positive thing would be laughable it wasn't so depressing.

Exactly this. When child abuse cases are made public everyone is up in arms, but woe betide the HCP who mentions that the child may not be the problem. There are many forms of abuse.

At the worst end you get munchausens by proxy, at the shallower end of the pool you've got parents in basic denial about their parenting and lifestyle.

Can I ask what is your DD like in school ? If she masks it's very unlikely that they will assess for ASD. My DD was seen at 5 but was told she didn't score "high enough" for assessment criteria. A few years later she behaved similarly at school as home, was excluded and in the end wasn't "suitable" for mainstream and ended up at a specialist school.

As for AD please don't think it's about lack of care and love, that's not always the case. You were in an abusive relationship which can contribute to forming secure attachments, it's not all about neglect or abuse but the home environment and atmosphere .

Hi all, OP here. I've been away this weekend and just caught up on the thread. It's probably my fault for how I worded my op but I think there may be some misunderstanding about what I am saying but will attempt to answer some of the points raised.

Firstly, I am cooperating with the professionals. I have already been told I am 'lucky' to have CAMHS involvement and as I have already said, I struggle to challenge professionals anyway so the CAMHS worker does not (afaik) know I feel this way.

I have no idea what this mans qualification is - I haven't been told. We were allocated a 'worker' earlier in the year for 8 sessions, which only started a couple of months ago and we have been messed around so there was a big gap between starting and when the sessions will conclude. At no time have I been told what the purpose of these sessions are or what they are leading to, nor what will happen next. I have not been given any advice on methods to use with DD, everything I have done so far has been from my own research.

DD has not been assessed or diagnosed for or with anything. The worker has met her twice, once as a joint session to hear the story so far, once where he did an activity with her around 'feelings'. One session with me on my own going through our history, compiling a timeline of events, one going through the Coventry criteria.

At the last solo session, his theory was that we have an abusee/abuser relationship. The next time I saw him, he went through the Coventry criteria. I wasn't aware of it at the time but I am not a stupid person and it became obvious that he was trying to convince me that she has an AD without actually explaining what an AD is or what it means or how we deal with this as a family. As I have said, the sessions comprise entirely of him asking leading questions and there is no space or opportunity for me to do anything but answer these questions as I he is dismissive. I have also felt patronised when he attempts to compare my situation with his parenting of his 9 month old child

Even though the Coventry criteria exercise was his attempt as discussing me that age potentially has ASD, it didn't actually do that as I was able to say 'yes' to many things under the ASD category and 'no' to lots in the AD category Abd vice versa. What I am saying is that it could still be either, this man (afaik) is not qualified to make a diagnosis but I am being fobbed off, yet again, from ganging her assessed properly for ASD. The professionals are treating me like I am stupid and need a label to absolve myself of blame (much like several posters are doing here actually).

Yes, I know that ASD is a lifelong condition with no cure but there are techniques that will be specific to helping her and those will be different depending on whether it is ASD or AD or neither or both. What I am finding frustrating is that nobody will listen to my concerns as I am 'just' the parent. My DD has been threatening suicide and attempting self harm since she was 6. I have been back and forth to my GP about her several times over the years and even paid for private counselling for her but was fobbed off by CAMHS who wouldn't take the referral. As soon as she mentioned self harm at school though, it was all taken very seriously and suddenly there were lots of professionals involved. It's the same story for most people - you're just not taken seriously. I know my DD better than anyone and whilst I am not an expert, I do feel it's worth at least an assessment for ASD but what do you do when they absolutely will not listen?

Apology for typos - should say the session was designed to dissuade me from thinking she potentially has ASD but did the opposite.

We also have a social worker who has been very clear to me and in meetings that this is not a child protection issue.

DD has some issues at school and has had a few meltdowns but otherwise masks well. I have only just found out that she struggles to work in groups with other children unless there is an adult there to define roles and is on the periphery of friendship groups. The HT also described her as an emotional child and gets very upset over relatively minor things. There have also been instances where she has totally misinterpreted what another child has said to her and been very upset needlessly. She also has to be removed from lessons as apparently she can't handle the classroom environment when it is noisy.

I have previously asked the school whether DD has friends at school and how she gets on but was always told there were only minor problems and she has friends. She is also exceeding academically. When I told the CAMHS worker what I had discovered from the HT at the CIN meeting, again he was really dismissive and implied that the HT was miscommunicating what the teachers had told him since they had previously told me there were no issues This is what I mean by dismissive. Any hint that it could potentially be problems that don't fit with his theory he has a reason why it isn't relevant or shouldn't be taken into account.

@hasitcometothis33

Why is the OP committed to blaming her daughter and label her as being autistic? Why can't she accept that she may need to change her parenting style?

Are you serious? Autism isn't blaming a child!! Why the fuck would anyone categorise a diagnosis of ASD as a form of blame?

She isn't saying she doesn't have to work on her parenting, just that it could be ASD and she feels they are overlooking that and not listening to her.

Why are you seeking to blame the OP? All these people saying 'don't blame yourself for AD' and then there are those snarling away and implying or saying she is trying to dodge a diagnosis of abusive parenting.

What exactly are your qualifications that enable you to pass judgement on whether a diagnosis is a good thing? What experience of ASD have you, which makes you such an expert?

@Afflictus
Come over to the SN boards. You will get far more informed advice and support for you and your daughter, whether it is ASD or AD.

Maybe he's shit and maybe your only error has not being psychic and parenting her like she has asd from birth. But from your op and previous thread, it does come across as though you refuse to acknowledge you may be contributing to her issues and any professional who just took that at face value and said 'ok asd dx it is then' would be failing their duty. Fixating on everything she does wrong and citing your other dc as proof it isn't you etc has the opposite result.

It really must be shit to be blamed as a parent and then be vindicated by a dx years down the line. But that doesn't mean professionals should approach all distressed dc from the PoV that autism is the most likely cause until proven otherwise.

Unless there's clear evidence of neglect AD should not be diagnosed, it's in the ICD10 (or DSM-V, one of those) diagnostic manual. This is something that many CAMHS workers conveniently forget.

What many professionals also forget (or don't know in the first place) is that neurological conditions can make attachments look different because the child isn't able to form attachments in the same way as a neurotypical person, and very likely any questions asked of a child in camhs' settings will be confusing and not make sense, and will be written by neurotypical people for neurotypical people.
Autistic children can also react more severely to stressors, which can lead to severe mental health problems and PTSD, this isn't because they're badly parented or neglected, it's that society/schools/friends/family tends to treat autistic people appallingly, and don't care that everyday sensory issues and expectations can lead to massive overload, which if left unidentified can lead to very difficult behaviour, which can look like AD on the pointless Coventry grid, when observed by those with an agenda to keep down referrals, which leaves parents like us helpless, whilst pressure is piled on us to stop making excuses for our naughty children and crap parenting and discipline them.

This will go against families, particularly when one or both parents are also autistic (which is surprisingly common), because they will also come across differently.
My son was asked by a camhs therapist about his feelings, he was in a room he'd never been in before, speaking to a person he'd never met, had been told that he was being filmed, so he said he was fine. We were discharged shortly after. This is a boy who has expressed suicidal thoughts since he was six, and goes through periods of demonstrating how he's going to do it, and even on a good day can struggle to understand and describe his feelings, he also often masks anything that he does feel, both of this things are common with ASD, but camhs didn't have a clue!
These people have such little understanding of the children they are supposed to be helping, it would be laughable if it wasn't so fucking tragic for many families. The OP's situation is very, very common. It's a horrible position to be in.

As for people suggesting the diagnosis isn't important, I can assure you the right diagnosis is vital. My son thought he was evil, the bad one of the family, he is now starting to understand himself better. I was diagnosed last year, up til then I was sure I was one of the crappest people around. Living a life without the chance of knowing who you are is shit, it really is.

Excellent posts Ineed.

I think the issue of 'blame' is cropping up because it's part of the wording of the post title. Perhaps 'location of the problem' would be a better way to discuss it... it's essentially a nature vs nurture debate isn't it? And we all know there's no clear cut answer.

OP, you're right- you absolutely are the expert when it comes to knowing your child and it is very poor that the CAMHS team working with you has made you feel undervalued and ignored. I definitely think that this is something you should raise with them as they are supposed to be working alongside you, not bulldozing you with their hypothesis and not taking your concerns into account and discussing them openly with you. It's also extremely bad practice that you have had no explanation of the qualification and role of the CAMHS worker or the purpose of their involvement. If you can't bring yourself to bring this up in person, I suggest you put it in writing. Hopefully you can be given a different 'CAMHS worker' or at the very least the one you are seeing will up his game.

To answer your question though-

YANBU to feel upset by the service your have received by CAMHS thus far and YANBU to want to discuss your concerns in depth and have them taken seriouly.
YABU if you reject the AD diagnosis on the basis that you feel it is 'blaming' you for your daughter's difficulties, as CAMHS do not carry a blame agenda, they want an accurate diagnosis as much as you do. It's just a question of working together effectively and it sounds like they could be doing a better job at this.

But from your op and previous thread, it does come across as though you refuse to acknowledge you may be contributing to her issues and any professional who just took that at face value and said 'ok asd dx it is then' would be failing their duty. Fixating on everything she does wrong and citing your other dc as proof it isn't you etc has the opposite result.

Actually, I have been very honest with all the professionals involved, including CAMHS, that I do not know how to handle my DD's issues and have admitted many mistakes to them. I do not defend myself to these people - I don't feel the need to do so since it is my (possibly naive) assumption that they are trying to help us. I also do not mention my other DC as the sessions are about DD. Even if I wanted to, I couldn't, as the sessions are tightly controlled via specific questions.

If I come across as defensive on here, it is only because I am frustrated that they will not listen to me but actually I have held my hands up and said I am making mistakes on here too. As I've already said, there isn't the space during the sessions to 'defend' myself, but on here I am free to vent surely?

CAMHS do not carry a blame agenda

I have no idea whether to cry or laugh at this.
My area is underfunded (no surprises there). On my local SN FB group pretty much every member who has an autistic child has been through camhs where they have been blamed and have received no useful help for the child.
We are involved in another sector of support who have told us that whilst camhs are the go-to place, they do not feel they can recommend or refer any more when the child is autistic (suspected or diagnosed), because they will not help, and in many cases they make the situation worse by placing blame on parents and don't acknowledge the ASD at all, even when it's confirmed.

I'm sure there are areas that are better, but please don't assume that they don't carry a blame agenda, because in many places they blatantly do.

YABU if you reject the AD diagnosis on the basis that you feel it is 'blaming' you for your daughter's difficulties

This is the thing though, it wasn't a diagnosis, just a tick box exercise clearly designed to persuade me that an assessment for ASD is needless. The CAMHS worker asked me half way through what I thought and I said 'it's 50/50, could be either' then at the end he said 'WE are both in agreement that it looks like she has AD' without actually telling me what that is. I didn't agree at all, I said it could be either according to the criteria. The whole thing feels like they have an agenda but I've no idea why because I've been open to everything they've suggested but that doesn't appear to be a two way street from them.

CloudPerson - Well, I'm really sorry to hear that has been your experience, I'm not sure what to say really because it doesn't make any sense to me. It's depressing (but I do believe you) that so many parents feel blamed, but I find it hard to think CAMHS actively set out to make them feel this way. CAMHS are not a judiciary, they exist to help children and young people with their mental health. They don't set out to make the parents feel bad. If parents are not being communicated with sensitively then it needs to be flagged up and sorted, but I really can't believe it is part of their agenda.

@Afflictus I am so, so sorry that what CAMHS are offering is so unhelpful. AD and ASD can co-occur which seems to cause some sort of category error for CAMHS.

The blame thing has deep roots. Historically Autism was blamed on some sort of fault in the mothering process. I would imagine that this attitude has a hangover in some CAMHS workers these days as those theories were current not terribly long ago. That mothers were or are to blame was also a theory about the aetiology of a number of mental health conditions. CAMHS do not have a blame agenda but work with them can feel as if the parents are being blamed, particularly when workers are both insensitive and overstretched themselves.

Do you have a sense of what type of support you think would help you and your family?

I think in the beginning, when I had no idea about child MH issues, I was looking for help understanding why my DD was suicidal at age 6 and how I could help her.

Now, I'm not so sure because I don't know if they even can or offer help. CAMHS are the gatekeepers to assessment on the NHS in my area and as I can't afford to go private, I would like them to agree to put her forward for assessment. I would also like to learn some techniques to handle her meltdowns (although I have started to put a few things I have read into practice and it's already had a noticeable effect - mainly around avoiding demands and pre-empting a meltdown). Primarily, I would like a professional to work with her on her self esteem/self worth and ways of managing her anxiety (which is getting worse in many respects) as these are things that I don't know how to do and I'm scared of making her worse by doing the wrong thing.

There are other organisations helping me to deal with my abusive XH more effectively and another who might be able to do art therapy with her and I've been offered the freedom Programme and a parenting course but I'm on the waiting list. There's only so much I can do without expertise of MH issues but I'm doing everything possible that's within my remit.