Paed visit- bit of a pickle now!

[hamish]

Hi All,

 

Been for a paed visit today. Went pretty well, I got to see the Dr that dx DS about 18mths ago, since then I have only seen his junior Drs who tbh haven't been very helpful and we have been in and out in about 15mins.

 

Spent over an hr today talking to paed as DS was 3 when dx ADHD and is 5 now, Dr is now saying that we shouldn't label DS as ADHD but should should tell school etc... he is possible ADHD but under ongoing assessment (or words to that effect) as it is impossible to tell at this stage what is going on. We made the decision at the end of the appt to start DS on 5mg of Medikinet and see what happens as he is concerned (as I am) about his increasing safety risk due to impulsive behaviour (4 incidents of running away and 1 climb out of upstairs window trying to reach roof in last 7 days alone ).

 

Discussed my concerns about ASD traits which he was surprisingly open minded about having dismissed an ASD completely at the initial appt. He said that the dx could be in flux for sometime as different symptoms may recede or come forward at different ages. A bit shocked really - he seemed more up to speed than he did 18 months ago, he is semi retired now- maybe he used the time for furthering knowledge

 

Bit of a quandry now though, I told the Dr we had got DS speech therapy and CAMHS referral but didn't mention that inbetween seeing him 18mths ago and now I took DS to another Drs clinic (because I didn't rate his jnr Drs and nobody seemed to be taking my ASD worries seriously) and it was the 2nd Dr who made the therapy referrals. Now Dr we saw today seems to think he will get copy of S&LT report which he won't because it will go to other Dr nor has he had anything from school as it has probably gone to other Dr too.

 

Feel mighty guilty now- do I 'fess up' and tell them I went somewhere else for a 2nd opinion and where do I go from here? Dr No.2 told me at her clinic in Jan that I would have to choose between their clinic and the one I went to today. It was my intention to cancel further appts at todays clinic but have now got some renewed faith in them and now DS has been prescribed meds I have to go back regularly so can't cancel.

 

Anyone else had a similar situation? I thought I was doing what was in DS best interests (i.e 2nd opinion) but I don't want them to think I am playing them off against each other particularly as Dr 1 (Hospital clinic) is pushing down the meds route and Dr 2 (Community Clinic) the intervention route.

 

Sorry this is long and rambling- probably trying to organise my thoughts.

[Mum of 3]

Sorry, Hamish, no good advice, although I sympathise, as I did a similar thing, going to my GP and getting rferred to the Paediatritian at the CDU, and at the same time going to the Ed Psychs with a self-referral. I've been told the two 'streams' will eventually 'meet up', but in your case, I suppose you're seeing 2 different Drs with the same remit... I think I'd be inclined to go with the one you, personally, feel most comfortable with. If Dr 1 is semi-retired, and you're seeing Jnr Drs you have no faith in, you might be better with Dr2. Could you go to her and show her the meds Dr1 has given, and ask her to continue the prescription?

[Cat]

 

I have been thinking about this since I read your post last night.

 

DR1 is quite happy to pescribe meds for something that your son may of may not have although it was 'he' who said 18 months ago that your son had ADHD. I am not suggesting that your son does not need the meds only that DR1 is happy to treat the symptom while stating that the cause may be a long time in coming.

 

It is now considered to be good practice to have a multi disciplinary assessment when assessing a child for a diagnosis of ASD. Is this what DR1 intends to do? How or when is he likely to decided if your son has a form of autism. While it is true that symptoms often recede only to become an issue again at a later date this is the nature of the condition if it is autism and an ADOS assessment or a DISCO assessment would take all of that into account. Is DR1 an ASD specialist Doctor?

 

DR2 on the other hand set up speach therapy and a visit to CAMHS - have you had this appointment yet? If yes what did they say? It is quite possible for CAMHS to make a diagnosis of ASD themselves. From where I am viewing DR2 appears to be trying to find out the cause is as opposed to just treating the symptoms.

 

No one can tell you what to do here but do not let a feeling of guilt make you jump into something which you might later regret. Check out both Doctors and their teams. If DR1 is semi retired will he diagnose before he finally calls it a day? If not will you have you have to start over again with someone new?

 

Cat

 

 

 

[Karen A]

I have been thinking about this since I read your post last night.

 

DR1 is quite happy to pescribe meds for something that your son may of may not have although it was 'he' who said 18 months ago that your son had ADHD. I am not suggesting that your son does not need the meds only that DR1 is happy to treat the symptom while stating that the cause may be a long time in coming.

 

It is now considered to be good practice to have a multi disciplinary assessment when assessing a child for a diagnosis of ASD. Is this what DR1 intends to do? How or when is he likely to decided if your son has a form of autism. While it is true that symptoms often recede only to become an issue again at a later date this is the nature of the condition if it is autism and an ADOS assessment or a DISCO assessment would take all of that into account. Is DR1 an ASD specialist Doctor?

 

DR2 on the other hand set up speach therapy and a visit to CAMHS - have you had this appointment yet? If yes what did they say? It is quite possible for CAMHS to make a diagnosis of ASD themselves. From where I am viewing DR2 appears to be trying to find out the cause is as opposed to just treating the symptoms.

 

No one can tell you what to do here but do not let a feeling of guilt make you jump into something which you might later regret. Check out both Doctors and their teams. If DR1 is semi retired will he diagnose before he finally calls it a day? If not will you have you have to start over again with someone new?

 

Cat

 

Cat.Help please.

Do you know where the documentation is regarding best practice ?

I know you know about these things.I have been attempting to remember where the ''good practice on multi-professional assessment ''comes from in the last month or so.

I have not found the information yet.Is it on the web anywhere yet ? Thanks Karen.

 

[Cat]

 

Hi Karen

 

The way forward for best practice in diagnosing autism was outlined in the National Children's Autism Plan for Autism which you will find here.

 

http://www.sncwd.org.uk/documents/national...plan%202003.pdf

 

(This is from the plan)

 

Outcomes of the GDA if ASD is suspected

• This should mean referral for a multi-disciplinary/multi-agency assessment (Stage 2: MAA see

4.2.4). In some local areas, components of MAA may have been carried out already during the

GDA. All children with ASD should receive all the components of a multi-agency assessment.

 

Stage 2: multi-agency assessment (MAA)

4.2.4.1 Who contributes to a multi-agency assessment team?

The term MAA has been used throughout this document to emphasise not only that that the team is

multi-disciplinary, working in every local area but that the professionals involved must be able to

work across existing professional and service boundaries to provide a multi-agency service (English

and Essex, 2001). By working together the multi-agency team co-ordinates and determines what

forms of assessment are needed, what the goals of the assessment are to be, and clarifies what role

different professionals will play. All the essential components of assessment should be provided by

local services within local area.

All members of the team should have specific ASD training with at least one member trained in

assessment and diagnosis of ASD using standardised assessment tools such as the Autism Diagnostic

Interview – Revised (ADI-R) (Lord, Rutter, and Le Couteur, 1994; Le Couteur et al, in press) or the

Diagnostic Interview for Social and Communication Disorders (DISCO) (Leekam et al, 2002).

It is the expert skills and clinical judgment of the individuals involved that are important not necessarily

their professional background (West Midlands Identification Working Party – see English, 2002).

Key roles and personnel should include:

• psychological (educational and/or clinical psychologist)

• educational (specialist teacher, or early years professional and/or educational psychologist)

• linguistic/communication (speech and language therapist)

• developmental/medical and psychiatric (community paediatrician, child and adolescent

psychiatrist); some teams have a child and adolescent psychiatrist and/or a consultant child and

adolescent learning disability consultant in the core team

• other assessments such as occupational therapy, physiotherapy, access to dietician and nutritionist

advice, should be part of the assessment procedure; all child development services (CDS) should

include occupational therapy, physiotherapy and access to dietetic services

• ASD family support worker

• Social Services should be involved in the care planning and implementation of appropriate early

support (Hart, Geldard, and Geldard, 2000)

 

The NAS are also saying this is the way forward

http://www.autism.org.uk/nas/jsp/polopoly....045&a=14655

Getting a referral to a diagnostician

The first person to approach will be your GP, though for young children your health visitor may also pick up that your child is experiencing difficulties. It can help to take along to your GP a list of behaviours and characteristics that make you suspect your child has an ASD, as this can help as a good prompt during your appointment. If your child is pre-school your health visitor or GP may carry out a screening interview called CHAT (Checklist for Autism in Toddlers). You can see a copy of this on our website: www.autism.org.uk/chat This is not a diagnostic interview but can help to identify behaviours that indicate your child may have an ASD.

Once your GP is convinced of your child's difficulties, whatever age your child is, s/he should refer you for an assessment appropriate for any child with a possible developmental problem.

 

Ideally, then, the next stage will be a multi-agency assessment an assessment by a team of professionals from different disciplines. The essential components of such an assessment are set out in the appendinx at the bottom of this page, and are taken from the National autism plan for children, which sets out guidelines and recommendations.

 

The importance of a multi-disciplinary assessment has also made it's way into the draft Adults Strategy for Autism because it was felt that multi-disciplinary assessments are best practice.

 

This chapter looks at specialist healthcare for adults

with an ASC, including multi-disciplinary assessments

and diagnosis, as well as post-diagnostic support. It also

addresses access to general healthcare and to mental

healthcare where appropriate.

A vision for the future

Adults with an ASC are able to access a

needs (and skills) based assessment (including

diagnosis) from suitably qualified local

professionals from a multi-agency team, who

are well integrated with other services. This

assessment informs an ongoing personalised

package of care. Post-diagnostic support

for adults with an ASC and their families

is widely available. All adults with ASCs

get the health services and support they

need from a healthcare system that makes

reasonable adjustments and has an appropriate

understanding of ASCs, including associated

sensory issues and co-morbidities.

[Karen A]

Hi Karen

 

The way forward for best practice in diagnosing autism was outlined in the National Children's Autism Plan for Autism which you will find here.

 

http://www.sncwd.org.uk/documents/national...plan%202003.pdf

 

(This is from the plan)

 

Outcomes of the GDA if ASD is suspected

• This should mean referral for a multi-disciplinary/multi-agency assessment (Stage 2: MAA see

4.2.4). In some local areas, components of MAA may have been carried out already during the

GDA. All children with ASD should receive all the components of a multi-agency assessment.

 

Stage 2: multi-agency assessment (MAA)

4.2.4.1 Who contributes to a multi-agency assessment team?

The term MAA has been used throughout this document to emphasise not only that that the team is

multi-disciplinary, working in every local area but that the professionals involved must be able to

work across existing professional and service boundaries to provide a multi-agency service (English

and Essex, 2001). By working together the multi-agency team co-ordinates and determines what

forms of assessment are needed, what the goals of the assessment are to be, and clarifies what role

different professionals will play. All the essential components of assessment should be provided by

local services within local area.

All members of the team should have specific ASD training with at least one member trained in

assessment and diagnosis of ASD using standardised assessment tools such as the Autism Diagnostic

Interview – Revised (ADI-R) (Lord, Rutter, and Le Couteur, 1994; Le Couteur et al, in press) or the

Diagnostic Interview for Social and Communication Disorders (DISCO) (Leekam et al, 2002).

It is the expert skills and clinical judgment of the individuals involved that are important not necessarily

their professional background (West Midlands Identification Working Party – see English, 2002).

Key roles and personnel should include:

• psychological (educational and/or clinical psychologist)

• educational (specialist teacher, or early years professional and/or educational psychologist)

• linguistic/communication (speech and language therapist)

• developmental/medical and psychiatric (community paediatrician, child and adolescent

psychiatrist); some teams have a child and adolescent psychiatrist and/or a consultant child and

adolescent learning disability consultant in the core team

• other assessments such as occupational therapy, physiotherapy, access to dietician and nutritionist

advice, should be part of the assessment procedure; all child development services (CDS) should

include occupational therapy, physiotherapy and access to dietetic services

• ASD family support worker

• Social Services should be involved in the care planning and implementation of appropriate early

support (Hart, Geldard, and Geldard, 2000)

 

The NAS are also saying this is the way forward

http://www.autism.org.uk/nas/jsp/polopoly....045&a=14655

Getting a referral to a diagnostician

The first person to approach will be your GP, though for young children your health visitor may also pick up that your child is experiencing difficulties. It can help to take along to your GP a list of behaviours and characteristics that make you suspect your child has an ASD, as this can help as a good prompt during your appointment. If your child is pre-school your health visitor or GP may carry out a screening interview called CHAT (Checklist for Autism in Toddlers). You can see a copy of this on our website: www.autism.org.uk/chat This is not a diagnostic interview but can help to identify behaviours that indicate your child may have an ASD.

Once your GP is convinced of your child's difficulties, whatever age your child is, s/he should refer you for an assessment appropriate for any child with a possible developmental problem.

 

Ideally, then, the next stage will be a multi-agency assessment an assessment by a team of professionals from different disciplines. The essential components of such an assessment are set out in the appendinx at the bottom of this page, and are taken from the National autism plan for children, which sets out guidelines and recommendations.

 

The importance of a multi-disciplinary assessment has also made it's way into the draft Adults Strategy for Autism because it was felt that multi-disciplinary assessments are best practice.

 

This chapter looks at specialist healthcare for adults

with an ASC, including multi-disciplinary assessments

and diagnosis, as well as post-diagnostic support. It also

addresses access to general healthcare and to mental

healthcare where appropriate.

A vision for the future

Adults with an ASC are able to access a

needs (and skills) based assessment (including

diagnosis) from suitably qualified local

professionals from a multi-agency team, who

are well integrated with other services. This

assessment informs an ongoing personalised

package of care. Post-diagnostic support

for adults with an ASC and their families

is widely available. All adults with ASCs

get the health services and support they

need from a healthcare system that makes

reasonable adjustments and has an appropriate

understanding of ASCs, including associated

sensory issues and co-morbidities.

 

Thanks CAT.

I thought that was the document you were quoting from but I could not remember what the exact title was to look it up. Karen.

 

[Karen A]

Hi Karen

 

The way forward for best practice in diagnosing autism was outlined in the National Children's Autism Plan for Autism which you will find here.

 

http://www.sncwd.org.uk/documents/national...plan%202003.pdf

 

(This is from the plan)

 

Outcomes of the GDA if ASD is suspected

• This should mean referral for a multi-disciplinary/multi-agency assessment (Stage 2: MAA see

4.2.4). In some local areas, components of MAA may have been carried out already during the

GDA. All children with ASD should receive all the components of a multi-agency assessment.

 

Stage 2: multi-agency assessment (MAA)

4.2.4.1 Who contributes to a multi-agency assessment team?

The term MAA has been used throughout this document to emphasise not only that that the team is

multi-disciplinary, working in every local area but that the professionals involved must be able to

work across existing professional and service boundaries to provide a multi-agency service (English

and Essex, 2001). By working together the multi-agency team co-ordinates and determines what

forms of assessment are needed, what the goals of the assessment are to be, and clarifies what role

different professionals will play. All the essential components of assessment should be provided by

local services within local area.

All members of the team should have specific ASD training with at least one member trained in

assessment and diagnosis of ASD using standardised assessment tools such as the Autism Diagnostic

Interview – Revised (ADI-R) (Lord, Rutter, and Le Couteur, 1994; Le Couteur et al, in press) or the

Diagnostic Interview for Social and Communication Disorders (DISCO) (Leekam et al, 2002).

It is the expert skills and clinical judgment of the individuals involved that are important not necessarily

their professional background (West Midlands Identification Working Party – see English, 2002).

Key roles and personnel should include:

• psychological (educational and/or clinical psychologist)

• educational (specialist teacher, or early years professional and/or educational psychologist)

• linguistic/communication (speech and language therapist)

• developmental/medical and psychiatric (community paediatrician, child and adolescent

psychiatrist); some teams have a child and adolescent psychiatrist and/or a consultant child and

adolescent learning disability consultant in the core team

• other assessments such as occupational therapy, physiotherapy, access to dietician and nutritionist

advice, should be part of the assessment procedure; all child development services (CDS) should

include occupational therapy, physiotherapy and access to dietetic services

• ASD family support worker

• Social Services should be involved in the care planning and implementation of appropriate early

support (Hart, Geldard, and Geldard, 2000)

 

The NAS are also saying this is the way forward

http://www.autism.org.uk/nas/jsp/polopoly....045&a=14655

Getting a referral to a diagnostician

The first person to approach will be your GP, though for young children your health visitor may also pick up that your child is experiencing difficulties. It can help to take along to your GP a list of behaviours and characteristics that make you suspect your child has an ASD, as this can help as a good prompt during your appointment. If your child is pre-school your health visitor or GP may carry out a screening interview called CHAT (Checklist for Autism in Toddlers). You can see a copy of this on our website: www.autism.org.uk/chat This is not a diagnostic interview but can help to identify behaviours that indicate your child may have an ASD.

Once your GP is convinced of your child's difficulties, whatever age your child is, s/he should refer you for an assessment appropriate for any child with a possible developmental problem.

 

Ideally, then, the next stage will be a multi-agency assessment an assessment by a team of professionals from different disciplines. The essential components of such an assessment are set out in the appendinx at the bottom of this page, and are taken from the National autism plan for children, which sets out guidelines and recommendations.

 

The importance of a multi-disciplinary assessment has also made it's way into the draft Adults Strategy for Autism because it was felt that multi-disciplinary assessments are best practice.

 

This chapter looks at specialist healthcare for adults

with an ASC, including multi-disciplinary assessments

and diagnosis, as well as post-diagnostic support. It also

addresses access to general healthcare and to mental

healthcare where appropriate.

A vision for the future

Adults with an ASC are able to access a

needs (and skills) based assessment (including

diagnosis) from suitably qualified local

professionals from a multi-agency team, who

are well integrated with other services. This

assessment informs an ongoing personalised

package of care. Post-diagnostic support

for adults with an ASC and their families

is widely available. All adults with ASCs

get the health services and support they

need from a healthcare system that makes

reasonable adjustments and has an appropriate

understanding of ASCs, including associated

sensory issues and co-morbidities.

 

I think it will be a very good day when the vision for the futute for adults with ASC beomes the reality. Karen.

 

[Cat]

I think it will be a very good day when the vision for the futute for adults with ASC beomes the reality. Karen.

 

Agree Karen but the Department of Health are already watering down the work of the external reference group leaving many of us asking how far the measures that Phil Hope rolled out in February will really go - probably not far enough and we have waited so long already

 

Hope the info was helpful to you.

 

Cat

[hamish]

Thanks for the advice everyone. I appreciate what CAT is saying about correct diagnostic criteria- not sure it is applied in this neck of the woods but it has given me something to flag up for the future.

 

We have started the meds this weekend for a months trial, it is worth seeing how it works particularly as the CAMHS witing list is about 5 months so we can't get any behaviour intervention for a while.

 

S x

[Karen A]

Agree Karen but the Department of Health are already watering down the work of the external reference group leaving many of us asking how far the measures that Phil Hope rolled out in February will really go - probably not far enough and we have waited so long already

 

Hope the info was helpful to you.

 

Cat

 

Thanks yes.

I have been attempting to remember where the evidence was to support my frequently repeated rant regarding the need for multi-professional holistic assessment with regard to ASD dx.You were the person with the info. Karen.

 

[Karen A]

Thanks for the advice everyone. I appreciate what CAT is saying about correct diagnostic criteria- not sure it is applied in this neck of the woods but it has given me something to flag up for the future.

 

 

 

S x

 

Well it should be applied to your neck of the woods soon......unless they believe the term ''National'' does not apply.