New to the Forum - REAL help needed for Independent Assessments

[rhi]

Hi I'm new here - 1st ever posting! I need real help and don't know where to turn. I am looking for an Aspergers expert to give me an independent assessment and diagnosis so I can plan support for my 6 year old boy.

At the moment he has a hi functioning ASD diagnosis but this is now 3 years old and he has changed so much.

I am going it alone having been 'burnt' in London trying to get a diagnosis ( 2 year waiting time).

Who is the expert in this field - where to I find them - do they see private patients - don't care where they are just that they are really good.

Any one know??

[wasuup]

Hi I'm new here - 1st ever posting! I need real help and don't know where to turn. I am looking for an Aspergers expert to give me an independent assessment and diagnosis so I can plan support for my 6 year old boy.

At the moment he has a hi functioning ASD diagnosis but this is now 3 years old and he has changed so much.

I am going it alone having been 'burnt' in London trying to get a diagnosis ( 2 year waiting time).

Who is the expert in this field - where to I find them - do they see private patients - don't care where they are just that they are really good.

Any one know??

 

NAS-National Autistic Society are good to ask-if you email them they can take up to 2 weeks to reply but do list everyone in your area and beyond.

 

Another thing you could do is ring your local private hospitals-many of them have consultant paediatrics psychiatrists working for them. The benefits of this is that they are usually work for the NHS too and just do a little private work maybe one afternoon a week. After initial consultation you can ask your GP to refer you back to their NHS clinic so you only have to pay or claim off your medical insurance for this once.

[Karen A]

Hi rhi and Welcome to the Forum.

I am confused but think you are saying that your son currently has a High Functioning Autism diagnosis and you would like him to be assessed for an Asperger's syndrome diagnosis is that right ?

 

If that is the case I thought I would say I think that most people currently believe that a HFA diagnosis is almost the same as an AS diagnosis.In fact if anything a HFA dx may be considered the more significant with regard to obtaining appropriate provision.

So you might spend a lot of money to obtain a second label for what is the same thing.

Perhaps what you need is a reassessment of what his current needs are.Children with an ASD dx can show changes in development over time.However that would indicate that the needs of the child might have changed but it would not change the diagnosis.

Can I ask how you hope the AS diagnosis would help are you hoping to obtain different provision ?

Karen.

Edited September 21, 2009 by Karen A

[Cat]

Hi rhi and Welcome to the Forum.

I am confused but think you are saying that your son currently has a High Functioning Autism diagnosis and you would like him to be assessed for an Asperger's syndrome diagnosis is that right ?

 

If that is the case I thought I would say I think that most people currently believe that a HFA diagnosis is almost the same as an AS diagnosis.In fact if anything a HFA dx may be considered the more significant with regard to obtaining appropriate provision.

So you might spend a lot of money to obtain a second label for what is the same thing.

Perhaps what you need is a reassessment of what his current needs are.Children with an ASD dx can show changes in development over time.However that would indicate that the needs of the child might have changed but it would not change the diagnosis.

Can I ask how you hope the AS diagnosis would help are you hoping to obtain different provision ?

Karen.

 

I was asking myself the same questions as you Karen - you beat me to it

 

Cat

[rhi]

Hi - thnks for responding - I'm not sure if I am replying to both you and Cat (I hope so but I'm not sure!). I don't mind/care what the label is - much of a muchness. What I want is an independent pov to see if I am providing the right support for Fin. I am outside the NHS system by choice so I am responsible for getting the provision Fin needs. I am looking for re-dx to confirm what I know and offer me insight on what he needs now.

Does that explain it better?

Rhi

[JsMum]

Rhi, if he has a dx of HFA then that is enough, you dont need to proove any more, I had private assessments done for my son in regaurds his HFA and that was enough as proof, the local authority might question it, but tribunals dont, you have a dx already, you dont need to prove any more, the local authority are just ignoring you and trying it on, dont let them fob you off, list the kinds of provisios you feel your son needs and fight for it, wasting time on further dx is only going prolong the situation, HFA is exact the same as AS the only difference is that HFA have delayed Speech or Language disorders, but other than that HFA and AS are the same, my son has Co morbids such as Sensory Intregration Disorder, ADHD maybe he has additional undx's and this maybe be why things are getting more increasingly harder, what is it do you want for your son, what kind of support, learning enviroment, then ask for it, if they turn you down, appeal, and go all the way.

 

Good Luck.

 

JsMumxxx

 

[call me jaded]

If your child is in a state school or has a statement of SEN naming an independent school then you cannot really be outside the NHS - they are part of Children's Services. Occasionally and rarely the original diagnosis is changed, but not very often.

 

If you could give us an idea of what it is that you are hoping to achieve then we can give more targeted advice.

[Kazzen161]

Other points to consider:

 

Round here a statement for HFA would bring in extra money for a school, one for AS would not.

 

Social services are more likely to give help for HFA than AS too.

 

 

[rhi]

If your child is in a state school or has a statement of SEN naming an independent school then you cannot really be outside the NHS - they are part of Children's Services. Occasionally and rarely the original diagnosis is changed, but not very often.

 

If you could give us an idea of what it is that you are hoping to achieve then we can give more targeted advice.

Hello everyone - thanks for responding - I'll give you all the background to this so you can see what I'm trying to do. Fin was picked up with a speach delay by his health visitor at the standard 2 year checks - we lived in Lambeth in London at the time. The community paed's team said he needed a full assessment and dx - waiting time 2 years. So we asked for a recommendation from the Community Paediatrian we had seen and she sent us to a private consultant who after a 360 assessment came back with Speach and Lang delay. Then tried NHS sp and lang and - waiting list 9 months - then 6 weeks therapy- then wait another 9 months. They wouldn't come into Fin's school because its private - wouldn't help set IEP targets because he's in a private school...as so it went on.

In the end I opted out - he was re seen 2 years later (aged 4) by the same private paed - dx HFA.

We put in place Sp and Lang, Social Comms and OT etc.

2 years later he is in year 2 - a clever guy in a hugely supportive private school. He is a great boy - really sunny. Now I am seeing more clearly so more challenges he has - attention spans, social coms are hard for him, fine motor skill/writing, gross motor etc.

 

SO....here I am wanting the name of an expert peadiatric consultant who will see him and help me solve some of these challenges. eg.. is this ADD/ADHD?..drup therapy?...dyxpraxia?....OT?..are we doing the right things there?...would CBT help him...

Eventually this will lead to putting therapy in place at home and school to help Fin and to work with an Ed Psy to help the school he is in support him.

None of this is NHS and he's not statemented and I'm not planning to do that either. Lambeth laughed at the idea - he's keeping up fine in school so of course we won't statement (they said).

We live in Bedfordshire now and I'm just in the habit of doing it alone now.

Does that explain why I'm asking and what I'm trying to do?

 

[JsMum]

Other points to consider:

 

Round here a statement for HFA would bring in extra money for a school, one for AS would not.

 

Social services are more likely to give help for HFA than AS too.

 

 

Its the other way round for us here in sunny east coast, its a postcode lottery for shore.

 

JsMumxxx

 

[Sally44]

NAS-National Autistic Society are good to ask-if you email them they can take up to 2 weeks to reply but do list everyone in your area and beyond.

 

Another thing you could do is ring your local private hospitals-many of them have consultant paediatrics psychiatrists working for them. The benefits of this is that they are usually work for the NHS too and just do a little private work maybe one afternoon a week. After initial consultation you can ask your GP to refer you back to their NHS clinic so you only have to pay or claim off your medical insurance for this once.

 

 

I was advised by my solicitor not to use professionals that work in education or the NHS because they tend to write reports and make recommendations within what their department provides, simply because that is what they know. And that was exactly the problem I had with an OTs report I had done by someone that worked for the NHS. When my solicitor wrote to her for further clarification of her recommendations she wrote back saying something to the effect that "in an ideal world then my son would benefit from x, y and z, but that that level of provision is simply not provided for by the NHS". And the whole point of this is that any 'additional' funding needed for extra staff, hours of provison, therapies etc that is over and above what the school, LEA, or NHS typically provide has to be funding by the LEA. That also applies to NHS professionals who are providing a service within education. So if an OT needs to work with your child then the LEA has to fund that. So if the LEA say that your child cannot have OT input into school because it is a 'health' need and not 'an educational' need then that is not true.

 

An independent professional is going to identify needs and make recommendations to meet those needs even if they are way over and above what the school, LEA or NHS currently provide. This is important because the SEN Code of Practice states that any additional input needed which is over and above what the LEA currently provide has to be met by the LEA. For example at my son's previous school the EP 'budget' was to go into school on a termly basis to see 1-2 pupils. School could not get the EP in to do more than that. So only 2 children per term were ever seen. If your child needs to be seen by an EP/OT/SALT on a termly, weekly etc basis then that 'need' has to be specified in their report and it is very difficult to get an LEA/NHS employee to recommend they see a child in school on such a regular basis because they have to bear in mind 'their department's budget'. Does that all make sense?

 

Where do you find an independent private professional? I went to the NAS autism services directory. You can also speak with other parents, the NAS and even independent schools in your area should have information about the professionals they use. But again make sure they are independent and work privately and have experience of writing reports towards tribunal and also of being a witness at tribunal if needed.

[wasuup]

Hello everyone - thanks for responding - I'll give you all the background to this so you can see what I'm trying to do. Fin was picked up with a speach delay by his health visitor at the standard 2 year checks - we lived in Lambeth in London at the time. The community paed's team said he needed a full assessment and dx - waiting time 2 years. So we asked for a recommendation from the Community Paediatrian we had seen and she sent us to a private consultant who after a 360 assessment came back with Speach and Lang delay. Then tried NHS sp and lang and - waiting list 9 months - then 6 weeks therapy- then wait another 9 months. They wouldn't come into Fin's school because its private - wouldn't help set IEP targets because he's in a private school...as so it went on.

In the end I opted out - he was re seen 2 years later (aged 4) by the same private paed - dx HFA.

We put in place Sp and Lang, Social Comms and OT etc.

2 years later he is in year 2 - a clever guy in a hugely supportive private school. He is a great boy - really sunny. Now I am seeing more clearly so more challenges he has - attention spans, social coms are hard for him, fine motor skill/writing, gross motor etc.

 

SO....here I am wanting the name of an expert peadiatric consultant who will see him and help me solve some of these challenges. eg.. is this ADD/ADHD?..drup therapy?...dyxpraxia?....OT?..are we doing the right things there?...would CBT help him...

Eventually this will lead to putting therapy in place at home and school to help Fin and to work with an Ed Psy to help the school he is in support him.

None of this is NHS and he's not statemented and I'm not planning to do that either. Lambeth laughed at the idea - he's keeping up fine in school so of course we won't statement (they said).

We live in Bedfordshire now and I'm just in the habit of doing it alone now.

Does that explain why I'm asking and what I'm trying to do?

 

 

Yes it does but my answer is still the same just email NAS and ask for a list of private consultants within a 60 mile radius of your area.

[rhi]

Yes it does but my answer is still the same just email NAS and ask for a list of private consultants within a 60 mile radius of your area.

 

I meant to reply to you earlier and say thank you - i have already emailed my enquirery to NAS. I was just wondering if anyone here could recommend good private professionals.

 

[call me jaded]

I think you have to become your own expert (in your own child) Have an OT assessment, without a doubt, and carry on working with the school. I think what you're asking indirectly is whether you need a clinical psychology assessment. Yes, probably.

 

Your GP should refer you to CAMHS or the community paediatrician for some of the answers you're seeking (two year wait where I am). I would personally ask for it as I am a 'belt and braces' kind of person and that would be my backup. i.e. go and get your private assessments but get them confirmed by NHS so that if (somewhere down the line) there is a disagreement they can't say that you've bought the diagnosis (Jaded, moi?). I've met lots of lovely professionals, but you only need one on a power trip to be scuppered. (Change of Headteacher springs to mind.)

 

Most of all learn to trust your instincts, and if it doesn't feel right, don't do it.

 

 

[Cat]

 

These days it is considered to be best practice if a multi- disciplinary team of professionals assess a child. However those who are best qualified to diagnose are Clinical Psychologists and Psychiatrists. The only real difference between a diagnosis of AS and HFA is if there was a speech delay in the early years of the child. Where I live it makes no difference if the dx is AS or HFA social services don't do either without a fight. A post code lottery is what it is for sure.

 

Cat

[Sally44]

Hello everyone - thanks for responding - I'll give you all the background to this so you can see what I'm trying to do. Fin was picked up with a speach delay by his health visitor at the standard 2 year checks - we lived in Lambeth in London at the time. The community paed's team said he needed a full assessment and dx - waiting time 2 years. So we asked for a recommendation from the Community Paediatrian we had seen and she sent us to a private consultant who after a 360 assessment came back with Speach and Lang delay. Then tried NHS sp and lang and - waiting list 9 months - then 6 weeks therapy- then wait another 9 months. They wouldn't come into Fin's school because its private - wouldn't help set IEP targets because he's in a private school...as so it went on.

In the end I opted out - he was re seen 2 years later (aged 4) by the same private paed - dx HFA.

We put in place Sp and Lang, Social Comms and OT etc.

2 years later he is in year 2 - a clever guy in a hugely supportive private school. He is a great boy - really sunny. Now I am seeing more clearly so more challenges he has - attention spans, social coms are hard for him, fine motor skill/writing, gross motor etc.

 

SO....here I am wanting the name of an expert peadiatric consultant who will see him and help me solve some of these challenges. eg.. is this ADD/ADHD?..drup therapy?...dyxpraxia?....OT?..are we doing the right things there?...would CBT help him...

Eventually this will lead to putting therapy in place at home and school to help Fin and to work with an Ed Psy to help the school he is in support him.

None of this is NHS and he's not statemented and I'm not planning to do that either. Lambeth laughed at the idea - he's keeping up fine in school so of course we won't statement (they said).

We live in Bedfordshire now and I'm just in the habit of doing it alone now.

Does that explain why I'm asking and what I'm trying to do?

 

 

If money is not a problem, and you are going to continue to educate privately and provide therapy privately, then the only real approach you can take is to get professional input about difficulties as they become noticeable. For example, you say he had a speech delay. From the DSM IV Diagnostic criteria that would probably rule out Aspergers as children should have typical language development. So it maybe more HFA. So if he was known to have a speech delay then a thorough assessment of his speech and language skills (which also includes social interaction skills) should be carried out by a SALT that has experience of ASDs and Speech Disorders. From their report it will highlight areas of difficulty and make recommendations on how those needs should be met in school. Then the SALT can also put into place a programme you can carry out at home as well if you feel you want to do that at home as well.

There are various skills and difficulties and they frequently overlap and intertwine and it needs you to sit with professionals and talk about difficulties and also to read up about difficulties associated with ASDs.

I will PM you about a very good private SALT who saw my son and carried out a really indepth assessment and report.

 

As you say, areas of difficulty tend to become more noticeable as they get older because basic skills are poor or non-existent and therefore they cannot progress onto higher skill levels if the foundations are not in place.

 

I also have an 8 year old son with HFA. He has the following difficulties, which you might like to google to get an idea of what they are and whether it is relevant to your son. Then you find out which professional is responsible for that 'area' and get advice from them.

 

Autistic Spectrum Disorder

Semantic Pragmatic Speech Disorder

Sensory Integration Disorder

Auditory Processing Disorder

Dyslexia and Dyscalculia

Delayed auditory processing

Poor short term memory and working memory (yet excellent rote memory for anything seen visually)

Irlen Syndrome

 

My son has weekly SALT therapy from a therapist that goes into school and this practised daily by his TA in school. She is also working on social skills. There is an on-going monitoring system called SCERTS which a decent SALT should know about. This quickly identifies areas of difficulty and areas of strength specifically around language and social interaction skills.

 

The SALT also identified his key areas of difficulty under the SPSD diagnosis and these areas of difficulty are worked on ie. inference, comprehension, giving narrative information, etc.

 

An OT goes into school on a termly basis. She has given him Auditory Integration Therapy which was very positive. He seemed more integrated from an information processing point of view and improved quite dramatically in all areas of difficulty ie. in speech, social interaction, physical ability. The OT is now going to work on relaxing techniques for his TA to use in school and other ways of optimising sensory input and modulation and processing. For example his TA may have a tug of war with him prior to lessons to help calm and ground him. Or he may do star jumps or push against a wall. The OT is also the professional who would work on writing skills.

 

They use various approaches and equipment for dyslexia and dyscalculia.

 

They have programmes to increase his short term memory and also working memory by extending the amount of information he can remember in sequence and by repeatedly testing him using approaches such as precision teaching.

 

Due to receptive speech difficulties and auditory processing disorder and delayed auditory processing and sensory integration problems my son is not taught in 'whole class' situations because he cannot take it in. He is in the main classroom, but the TA work with him in small groups and if he is in whole class teaching she sits with him to ensure he is on task and understands what is going on and what he should do.

 

Something else I did privately which I feel was a great benefit was using Play Therapy. I found a group of therapists that worked with autistic children. They held child directed play on a 1:1 basis with each child and then integrated them into a group. They didn't use play as a therapy to uncover emotional trauma. This was more like allowing the child to manipulate a toy and them interact with the child on their level doing what they were doing. Then extend the interaction by following what the child was doing or introducing something new into the play. Sometimes, especially at the beginning that involved little or no speech. I feel that PT gave my child confidence to want to interact and motivated him. The fact that he wanted to play and join in and said so meant that the SALT had to put together a programme to help teach him skills to socialise because he did not have them.

 

I also feel it is important to do one thing at a time rather than throw everything at the problem. Then you can also identify what is actually having a beneficial effect. I am also a firm believer in physical activity improving mental performance because movement is connected to brain development. So doing physical things is good for our children. And although they may find something like a football club impossible to access, you can do other things such as swimming, trampolinging, foil fencing, horse riding, rock climbing etc.

 

Remember that you also need time just to be a family together and to just do stuff you all enjoy.

And sometimes our children just need to grow up a bit and develop to a certain level before they can begin to attain certain skills. They tend to be more immature in most areas of development compared to other children.

[rhi]

If money is not a problem, and you are going to continue to educate privately and provide therapy privately, then the only real approach you can take is to get professional input about difficulties as they become noticeable. For example, you say he had a speech delay. From the DSM IV Diagnostic criteria that would probably rule out Aspergers as children should have typical language development. So it maybe more HFA. So if he was known to have a speech delay then a thorough assessment of his speech and language skills (which also includes social interaction skills) should be carried out by a SALT that has experience of ASDs and Speech Disorders. From their report it will highlight areas of difficulty and make recommendations on how those needs should be met in school. Then the SALT can also put into place a programme you can carry out at home as well if you feel you want to do that at home as well.

There are various skills and difficulties and they frequently overlap and intertwine and it needs you to sit with professionals and talk about difficulties and also to read up about difficulties associated with ASDs.

I will PM you about a very good private SALT who saw my son and carried out a really indepth assessment and report.

 

As you say, areas of difficulty tend to become more noticeable as they get older because basic skills are poor or non-existent and therefore they cannot progress onto higher skill levels if the foundations are not in place.

 

I also have an 8 year old son with HFA. He has the following difficulties, which you might like to google to get an idea of what they are and whether it is relevant to your son. Then you find out which professional is responsible for that 'area' and get advice from them.

 

Autistic Spectrum Disorder

Semantic Pragmatic Speech Disorder

Sensory Integration Disorder

Auditory Processing Disorder

Dyslexia and Dyscalculia

Delayed auditory processing

Poor short term memory and working memory (yet excellent rote memory for anything seen visually)

Irlen Syndrome

 

My son has weekly SALT therapy from a therapist that goes into school and this practised daily by his TA in school. She is also working on social skills. There is an on-going monitoring system called SCERTS which a decent SALT should know about. This quickly identifies areas of difficulty and areas of strength specifically around language and social interaction skills.

 

The SALT also identified his key areas of difficulty under the SPSD diagnosis and these areas of difficulty are worked on ie. inference, comprehension, giving narrative information, etc.

 

An OT goes into school on a termly basis. She has given him Auditory Integration Therapy which was very positive. He seemed more integrated from an information processing point of view and improved quite dramatically in all areas of difficulty ie. in speech, social interaction, physical ability. The OT is now going to work on relaxing techniques for his TA to use in school and other ways of optimising sensory input and modulation and processing. For example his TA may have a tug of war with him prior to lessons to help calm and ground him. Or he may do star jumps or push against a wall. The OT is also the professional who would work on writing skills.

 

They use various approaches and equipment for dyslexia and dyscalculia.

 

They have programmes to increase his short term memory and also working memory by extending the amount of information he can remember in sequence and by repeatedly testing him using approaches such as precision teaching.

 

Due to receptive speech difficulties and auditory processing disorder and delayed auditory processing and sensory integration problems my son is not taught in 'whole class' situations because he cannot take it in. He is in the main classroom, but the TA work with him in small groups and if he is in whole class teaching she sits with him to ensure he is on task and understands what is going on and what he should do.

 

Something else I did privately which I feel was a great benefit was using Play Therapy. I found a group of therapists that worked with autistic children. They held child directed play on a 1:1 basis with each child and then integrated them into a group. They didn't use play as a therapy to uncover emotional trauma. This was more like allowing the child to manipulate a toy and them interact with the child on their level doing what they were doing. Then extend the interaction by following what the child was doing or introducing something new into the play. Sometimes, especially at the beginning that involved little or no speech. I feel that PT gave my child confidence to want to interact and motivated him. The fact that he wanted to play and join in and said so meant that the SALT had to put together a programme to help teach him skills to socialise because he did not have them.

 

I also feel it is important to do one thing at a time rather than throw everything at the problem. Then you can also identify what is actually having a beneficial effect. I am also a firm believer in physical activity improving mental performance because movement is connected to brain development. So doing physical things is good for our children. And although they may find something like a football club impossible to access, you can do other things such as swimming, trampolinging, foil fencing, horse riding, rock climbing etc.

 

Remember that you also need time just to be a family together and to just do stuff you all enjoy.

And sometimes our children just need to grow up a bit and develop to a certain level before they can begin to attain certain skills. They tend to be more immature in most areas of development compared to other children.

 

 

Totally helpfu;l - thanks for taking the time to write this. Rhi x

[Mum of 3]

Rhi, If I lived nearer London and/or had the money I'd be going here

 

http://www.londonchildrenspractice.com/

 

(Mods, if I'm not allowed to post this link, please feel free to edit, and let me know, and I'll PM Rhi with the info )

 

I have a friend who Nannys for a little girl with add/asd and they attend weekly. She has occupational therapy (when I asked our NHS services about that I was told it wasn't really for children...more for people on disability benefits!!!!!), SALT, social skills group (I think), and my friend thinks it's marvelous.

 

If you do go, could you let me know how you get on? My little boy is 6 (Today!!! ), and we could, at a pinch, use some savings to attend, and stay with my sister in Cambridge, if it would be of enough value to him.

 

Good luck!

[Kathryn]

Hi Mum of 3, the link is fine.

 

If anyone wants to recommend specific individuals though please can they do this via pm. Thanks.

 

K x

 

 

[rhi]

Rhi, If I lived nearer London and/or had the money I'd be going here

 

http://www.londonchildrenspractice.com/

 

(Mods, if I'm not allowed to post this link, please feel free to edit, and let me know, and I'll PM Rhi with the info )

 

I have a friend who Nannys for a little girl with add/asd and they attend weekly. She has occupational therapy (when I asked our NHS services about that I was told it wasn't really for children...more for people on disability benefits!!!!!), SALT, social skills group (I think), and my friend thinks it's marvelous.

 

If you do go, could you let me know how you get on? My little boy is 6 (Today!!! ), and we could, at a pinch, use some savings to attend, and stay with my sister in Cambridge, if it would be of enough value to him.

 

Good luck!

 

 

Thank so much for this - It looks really good...I'll let you know how we get on.

Rhi x