referral for assessment

[LizKeen]

DD1 (6 almost 7) has been referred for assessment. We suspect Aspergers or ADHD or both. I think it may be mild, which is why it has gone unnoticed until now, although there were always a lot of issues at home. But as she was my first I didn't fully realise what was normal and what wasn't. Plus she is a girl and I know that girls can sometimes "mask" some of the symptoms.

I don't know how long the waiting list is, but they have sent a letter confirming that they have received the referral, and I think it is sinking in now that this is real. Does that even make sense?

So what do I tell DD? So far we haven't told her anything. I know she would fret and worry so I am keen to only tell her what I have to. But she is very perceptive and she will want an explanation for the assessment appointments. Any examples of the phrasing I could use when explaining it would be good, I don't want to get it wrong.

There is also the issue of what I will be able to say in any appointment where my ex is present and there are questions being asked about that relationship. He was physically, emotionally and financially abusive, and at the end of the relationship was given a two year suspended sentence for what happened. We are on good terms now, he is a good father to DD and he has completely turned his life around. But he still refuses to accept the extent of the abuse, and does still blame me for it rather than accept the blame himself.

I want to and need to be honest with the HCPs but the fact is, I am not comfortable dragging that up in front of him. Is it likely they will ask for us to speak to them separately? If I request that, can I do it discreetly, so he doesn't know it was me that asked and just thinks its normal procedure?

I really have no idea of what is involved in the assessment process, and I am keen to hear others' experiences.

Sorry, I am asking a lot. My head is full of questions. :o

[ruthsmaoui77]

Hello I have 2 sons with ASD so have been through this process twice, but both were different experiences (even though they took place at the same place). Both times the boys were referred to a paediatrician (sp) and then referred to a social communication clinic. My youngest son was 6 at the first appointment. The paediatrician was accompanied by another professional who gave my son activities to engage in (in the same room) whilst he took a comprehensive history from me. The appointment lasted well over an hour and a half. He asked so many questions regarding early development, my concerns, etc. All the while he had one eye looking and observing my son. It was quite apparent that my son had ASD and so at the end of that appointment I was told he would be referred to the social communication clinic. as quickly as possible. We received that appointment 3 months later (which is very quick in my area of London).

This child had quite limited understanding and had very delayed language skills so I just told him that the doctor wanted to see that he was growing well.

My older son had a very different experience. He was referred at age 5 to a paediatrician because he had real problems adjusting to year 1 and his behavior was out of control (running away, throwing things, etc) but I could largely manage his behaviour at home. The first consultant he saw discharged him and advised me to change schools because he didn't feel that my son needed to be referred on. He was very verbal and behaved really well at that appointment. He is also quite bright, but he did conclude that my son had a slight emotional/social delay. I changed schools and things really improved. He still had problems at school but nothing that couldn't be handled by behavioural techniques. Then just after my younger son was diagnosed a special ASD consultant came to visit my younger son at school to see how the school could support him best - he asked to see how the youngest boy interacted with his older brother and then he said "Oh you didn't tell me that both boys have ASD". The SENCO said the older one doesn't and the consultant said, "yes he absolutely does". He was then referred again and diagnosed six months later aged almost 9.

Because my older child had much greater understanding I just explained that "You know how you find it hard at school, especially getting on with other kids (he was bullied), we are going to see a doctor to see if he can find out if there is a reason you are finding it so hard". I told him instantly about his diagnosis and he was so relieved by it.

After all that I guess what I'm trying to say that this experience is different for each child. Go with what feels right for you when talking to your daughter, only you will know how much she is able to understand.

Perhaps you could write a letter to tell the doctor about your domestic violence and hand that to him, instead of discussing it in front of your ex.

Good Luck. Sorry for writing so much.

[LizKeen]

Thank you, your post is really helpful. Yes, my DH suggested writing a letter about the abuse, so I think I will do that.

I am concerned reading of your experience that my DD might have similar happen as happened to your oldest son. I don't think anything would be immediately obvious in a session as she is very well behaved in public and very verbally advanced for her age (this has been noted by every teacher since nursery and the school nurse, so its not just me) and she interacts well with adults.

It is other children/classroom situations that she struggles the most with. Her behaviour at home has also calmed down considerably as I have made some changes. I have suspected that she needs assessed for over a year now, but the GP and school didn't want to know before. This years teacher is much more on top of it, and her struggles socially have become more apparent than they were before.

Perhaps the history and my description of her behaviours at home would highlight it more?

Did you go alone to the assessments? Would it be better for me to go alone? I think that my DD will struggle with me speaking about things in the same room. She will listen to what I am saying and she will take it to heart. I think that will be quite distressing for her, so maybe I really do need to explain it all fully to her, so that she understands why I am saying the things I will have to say.

[ruthsmaoui77]

The children had to come to all appointments with me. With my younger son who was 6 at the time the consultant talked to me in the same room as him but he was being occupied by another professional. With my older son who was almost 9 it was different. A consultant talked to me in one room whilst another professional engaged with my son in a separate room, but I could see/hear him through the window and intercom. He couldn't hear me but could see me. This sounds like a much better arrangement for your daughter if that is possible. It meant I could talk freely about my son's difficulties without him being aware of it. I was really shocked and very emotional when I heard him saying just how awful his experience of school was and I think he only opened up like this because I wasn't in the same room.

You could also write down your main concerns regarding her development and give these to the consultant to read.

I have to admit that with my older son I was more than happy to be told that he was developing within normal range apart from a slight social/emotional delay. I was happy to accept that a change of schools would improve things. You see at that time I really didn't have too much of a problem at home with him because I knew him so well and could prevent any behavioural incidents before they happened. I knew he was out of control at school but then I could see clear faults with his teacher and the school environment, plus he was travelling over an hour each way to get there and back. I thought he was probably exhausted. When the SENCO at the new school told me that they would tackle his problem behaviour with specific targets and positive rewards I was delighted, especially when his behaviour improved dramatically. I knew he found it really hard to follow the school rules, socialize with other kids but with lots of effort from him and rewards from school and home he could just about manage not to be 'naughty' at school and I was O.K with that. I was scared of having him 'labelled', all my family said it would be the wrong hing to do. I only started to change my feelings when my younger child who has more classic autism needed to be diagnosed and I realized how much better his life was/is with the extra support from school. I had told the SENCO that I thought my older son had high functioning autism months before the consultant came out to visit them at school, but she laughed at me and said 'don't be silly - he is fine. He is just like most boys and can be naughty at times! He'll grow out of it".

I understand your concerns regarding your DD, many doctors/professionals misdiagnose the more high functioning children, but this is more common when the parents themselves are happy to accept that (as I was). I think if professionals see that a mother is concerned about her child's development then they will take it much more seriously. The first school referred my older son (not me) of course I agreed as I didn't have much choice, but at that time despite my inner concerns I certainly didn't show them to the paediatrician. When he was referred the second time I expressed my concerns fully and they were taken seriously, but by then anyone with any training in ASD would have been able to identify his condition. He is very immature socially and emotionally.

Best wishes

[LizKeen]

Thanks again.

When I said alone I meant without another adult, sorry I should have made that more clear.

I think the separate room set up that you describe would work much better for us, so hopefully there is an opportunity for me to request something like that.

I am keen to get her support in school. DD is very good at holding herself together when we are out or she is not at home/with me or her dad or her step parents. When she gets home she explodes with it all, and we have had tantrums where she is completely out of control. She has pulled curtain poles off the wall in the past, among other things. This behaviour has calmed completely now because it is no longer met by us with the attitude that it is something she can control. I have to admit, we didn't handle it at all well in the past, and at times got stuck in a bad cycle of punishment. I am now much more open to the tantrums, and I can step back and let her work through it, whereas before it was something I thought I was supposed to be fixing. I hope that makes sense. I have also gone NC with some toxic family members and the difference is night and day. I think they were having a bigger impact on her than I realised.

In school, her marks are lower than her verbal intelligence would suggest she can achieve, she has issues with concentration and low self esteem and is struggling socially. Her teacher says she fixates on things and he finds it very difficult to reach her when she sinks into that behaviour. She is withdrawing from the group of friends she was in, and I am worried about some of the things she is saying and how she is interpreting the social interactions in school. Despite all that, the school are not putting in any consistent support, not referring her to the special needs teacher, and telling us they won't be putting her forward for any assessments. I am worried that she is going to continue to struggle, and her self esteem drop even further. She is already adamant that she isn't going to university, and has even told me she doesn't want to do GCSEs.

On the whole she is a lovely, bright, chatty child and she is really sociable, there just seems to be something holding her back, and then she is frustrated with herself. I feel that she is immature socially and emotionally. She gets on better with younger children. She has taken a leap in maturity in the last few months, but I still feel she is behind her class mates. But then in other ways she is very mature.

[ruthsmaoui77]

Your DD sounds exactly like my oldest son. He is desperate to have friends and is very sociable with younger kids and adults but he really struggles with his own peer group. His immaturity makes him stand out and he is bullied for it. This naturally causes a low self-esteem.

The school were only ever interested in addressing his behaviour (lack of attention, not finishing work, not following instructions, fights with other children etc) and didn't even try to help him with his social difficulties until he was diagnosed.

Now they have started a 'circle of friends group', lego therapy and social skills training. He is finally getting some 1-1 support in class to help him reach his academic potential.

Having the diagnosis has completely changed the way the school treat him - it's crazy because he is the same child they have had for 4 years, but only now (since diagnosis - last June) are they wiling to acknowledge that he isn't a 'naughty boy' after all. It's sad really, but getting a label was most certainly the right thing to do as it was for my younger son, I only wish I had supported it MUCH earlier (but then I wasn't ready to accept it).

Good luck.