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DSM-5 diagnosis - was it handled properly?

kingers

Yesterday we received the formal diagnosis of ASD for my 5 year old son. 

The paediatrician had called a multi-professional meeting at his school then asked my son's mum and me to come along an hour later to be told the findings. 

When we were shown into the room, the head teacher and my son's learning support assistant were also there. I like them both and get on well with them, but I did think it was rather inappropriate for the paediatrician to tell us our son has ASD in front of two school members of staff. 

The NICE guidelines say: 

1.8.1      After the autism diagnostic assessment discuss the findings, including the profile, sensitively, in person and without delay with the parents or carers and, if appropriate, the child or young person. Explain the basis of conclusions even if the diagnosis of autism was not reached. 

1.8.2      Use recognised good practice when sharing a diagnosis with parents, carers, children and young people. 

First they went through each of the DSM-5 diagnostic criteria explaining whether or not my son met each criterion and only on conclusion told us of the diagnosis. 

Though I was expecting to be told my son was on the spectrum I do think it could have been handled more sensitively by being in private and telling us at the start what the diagnosis is followed by an explanation of why. 

I understand that DSM-5 splits ASD into three levels. I asked which level my son was on (I suspect level 2) and was told they do not make the diagnoses on that basis. They explained that diagnosis a DSM-5 level was elective (at their discretion apparently) and about 90% of clinicians in the UK do not indicate a level in their diagnoses.

I would appreciate views, information and any references as to whether or not indicating a level is indeed discretionary in DSM-5 and whether it is really true such a high proportion of clinicians do not provide a level in their diagnosis. 

Many thanks.

  • Can I ask you a question and he may well be only 5 year old in your own eyes, but was he present at his diagnosis?

    I think it an advantageous other professioanls were present because they know first hard all round difficulties.

    May be you trying to look into it too deeply in determining the levels etc? Is this going to help you help your son is what I mean?  How will this benefit him through the support?

    At my diagnosis just last year I was given all the DM5 information too which was not important to me. What I needed to know was that am I autistic or asperges and that didn't matter which one. It a name that I can comprehend and pass onto people to help me and understand when there is something upsetting me they may otherwise questionwhy has something that trivial getting to me, instead they can help me feel better by explaining those blocks for me when they occur.  I didn't need to know the whole package and I don't think neither do people in our every day life. Too much information can be not helpful.

    I hope you can now relax a little about the welfare for your son and at 5 years old he can you can all enjoy a full life together going about some things may be an individual way at times. 

    names and letters of diagnosis do not alter anything in that it how the people around us really help us to intergrate and be there when we come across our own difficulties. I just had one tiny one this morning in Church. One hymn wasn't sung and asked at end so we not singing that one then. A year ago in a different Church it would have been met with sarcasm. Today the Deacon just answered my question calmly and the panic feeling vanished. So different when they know autism and that all what most need to know. (PS am not that young either)

    Hope you don't think am being flippant or anything with you in this post but your son has the diagnosis what needed and shows the school is caring enough to want to be part of it all.

  • Former Member
    Former Member

    I very much agree with Treeswaving.

    Having a diagnosis implies that the person has enough difficulty with various aspects of life to be given the label. This label is quite powerful as it brings one under the protection of the equality act and it makes schools etc react different compared to a NT child.

    Some people with a HFA label feel that is inappropriate as they are so profoundly affected by the condition and don't feel able to function very well. 

  • I think that was a very hard way to find out for sure your child has ASD. 

    I know that I found the post diagnosis meeting for my child quite emotional and much as I like my child's school - I too would have found this quite inappropriate.  I think you should have been told privately as a family first and had a little time to think it through. Even when it is expected, it is a 'shock' when you find out for sure and I think that was really overlooked in your case.

    I do think (having been told privately) that there is a huge benefit to having a meeting with staff directly working with him to consider the implications of the diagnosis.

    For his school and others who are working closely with him,  to hear directly form the Dr's mouth that he has ASD and this impacts him on in ... areas and he needs ... support  and they need to use ... strategies is a real benefit. Very often schools have preconceived ideas about ASD and also they don't fully listen to parents - but they often have higher regard for fellow professionals.

    I hope that they will take on board what the Dr says and I also hope that the Dr has given you a written report (which you can share with the school as you see fit) which profiles his strengths and weaknesses and has clear recommendations as to what support he needs both at home and school (SALT, OT, Early Bird Course for you etc)  This will really help you to access the support he needs and to get a good EHCplan in place.

    I understand that you may feel the clarification of 'levels' is important -  as you come to terms with how mild / severe his Autism is. I think the reason that Dr's won't assign these,  is that by the nature of ASD, I think it is very hard to neatly catergorise people into these levels, especially in a child so young, where so much can change.

    Most individuals will have a mixed profile - so their development is uneven. How do you catergorise someone into 3 simple levels, when their profile of strenghts and weeknesses and areas where they do and don't need support can be so varied? 

    I also think they don't want to minimise expectations by others as again, as a developmental disorder, there is such scope for improvements and coping skills. Also a level could fesibly change over time - it is so much simpler to just give "ASD" as the diagnosis and his support needs / difficulties be defined more fully over time by the OT's, SALTs, etc who will work with him.

    Personally I don't think you can catergorise autism into mild, medium, severe, or level 1,2,3 or High and Low functioning. I think terms such as this are well meant, byt not really all that helpful and can be quite misleading.  Every autistic person is unique in their profile and in their support needs.

    I would focus on ensuring his difficulties and needs are clearly documented in writing. Get an EHC plan in place as soon as possible so he gets the support that he needs to help him to manage his difficulties.

    I also would politely feedback to the Dr in the spirit of constructive critism - that as helpful as the meeting was- you really would have liked to hear the news privately first.  I know it won't change what happened to you - but maybe it will help another family in the future?