Where do i go now?

[ruthie]

My DS who is 10 has just had the final dignosis as having HFA. So where do i go now? It's something i know nothing about, i have been given an information pack from Autism West Midlands. So i'm looking for lots of helpfull advice on some reading material for me and my partner on HFA, obviously nothing to in depth just something that is a starting point for us to begin to understand.

 

Also what support is out there for us?

 

It seems to be a bit of a minefield at the minute and i just don't really know where to start.

 

Also one other question, is there any books out there for children, something i could maybe use to help me explain to DS about his diagnosis as yet he is totally unaware of why we have been going to appointments and what they were for. Should i be telling him now all about them and explaining to him why he is different, or should i just let him carry on the way he is ?

 

I am one very confused mum right now.

[charlotte]

books wise for adults and children look on jessica kingsley's web site they have a specialist section.

you could try just reading him a book slowly talking to him about it as and after you read it see how he reacts. he may well already be aware he his not like most other children and be wondering why and the knowlege could help him.

 

to good books are a stranger in the playground and freaks geeks and aspergers syndrome as this is from a childs prespective and there are many many simalarities. you will learn as you go to a degree as every child with an autistic spectrum disorder is different. many groups are listed on the national autistic society website though it can be hard as i have found to find something for the more able end of the spectrume.

 

an organisation that has helped me no end is autscape.org they have a yearly residential conference by and for people on the spectrum and those who are relatives etc. children do come and they proivide child care there and also have online forums you can join.

[Nikkih]

A book we used to tell our DS about autism was 'Can I tell you about aspergers'. I know not strictly HFA, but I think will do the job well.

 

Our DS was diagnosed at 3yrs 8mnths, and we had used the word autism around him since then and he knew he was a bit different, but when he got to around 9 or 10 we decided to sit down and explain it a bit more to him. Although he was diagnosed wioth autism, we found the above book fab, and he still picks it up to have a look every now and then.

[Karen A]

Hi.

There is lots of useful information on the National Autistic Society Web site for parents of newly diagnosed children.

NAS also run a help course and may have one in your area.We found it useful both in terms of information but also just to get to know others in the same situation.

 

There is a thread with lots of ideas for books for children.I will see if I can find it.

 

http://www.asd-forum.org.uk/forum/Index.php?/topic/24992-how-to-tell-your-child/

http://www.asd-forum.org.uk/forum/Index.php?/topic/22945-book-recommendations/page__p__274845__hl__information__fromsearch__1#entry274845

 

It can all feel a lot to take on board when a child is first diagnosed with ASD.However it is worth remembering that you have the same child you had before diagnosis and there is plenty of time to learn new things.

 

When I joined the Forum I knew very little.Now I even think I have some idea of what I am talking about some of the time.

 

Karen.

Edited September 23, 2010 by Karen A

[JsMum]

Firstly welcome to the forum, and I understand why you are soo confused it must be very overwhelming for you and your family right now, but it is positive to be given a dx as many parents with children on the spectrum such as High functioning Autism it can be incredibly difficult to get achknowledged, my area do not diagnose High Functioning Autism, so some parents are left with Features, traits, exct, until My son started a residential school where his full needs where identified, and met and his needs are on the Autistm Spectrum plus other co morbids such as ADHD and other conditions.

 

So my first question is how is school, do you feel he needs extra support there, and if your son is higher functioning and intelligent there is still support for Scoial functioning, social skills, so it is not just about academic ability.

 

There is also speech and language support, Occupational Therapy Support and Behavioural support, so it maybe that he requires a full assessment of his needs, to assertain if he requires a statement of special Educational Needs.

 

Does your son recieve any additional support at school if he is in school that is as parents can also choose to home educate or like my son he was school refuser and too unwell due to mental health deteriating to attend mainstream school until he went to a specialist school.

 

There is a lot of information here on Statementing and a brillaint website to contact are here in this link.

 

http://www.asd-forum.org.uk/forum/Index.php?/topic/20381-special-educational-needs-advice/

 

 

There is also Benefits called Disability Living Allowance and if you need to pay for carers to help care for your child because of things supervision, meeting thier needs and its impossible because of siblings ect you can be assessed for Direct Paments.

 

Again Contact a family have a wide range of booklets on information on this here.

 

http://www.cafamily.org.uk/families/rightsandentitlements/benefitstaxcredits/dla.html

 

As well as National Autistic Society.

 

http://www.autism.org.uk/living-with-autism/benefits-and-community-care/disability-living-allowance.aspx

 

My other recommendation would be to attend a local Parent support group where parents with children with Autism related conditions, some are called Aspergers Syndrome support group, or Autism Support group or Autistic Spectrum Disorder Support group, there are many different references but they will have similair information services about DLA, Statementing for Education ect...

 

In reguards learning more about Autism National Autistic have a fantastic information on Autism and if you contact them they send you a information folder.

 

For now though this website explains Autism.

http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction.aspx

 

 

Contact your local Authority and see if there is a service spersifically for Autism, and if there is a register for Disabled Children, this is where the Local Authority then contact you to give you further information on services and provisions in your area.

 

For example my son is on the local authorities childrens disability register and we recieve regular information on Services for Children with Disabilties, these are for all disabilities but a number is for ASD/ADHD/Mental health issues.

 

It is not suprising you have just been given a diagnosis and then the service leg it but I would of thought the team that Diagnosed you gave you more inforation on the things you can access for support.

 

There are courses from National Autistic Society called Help, these are really good and great to meet other parens with children with an ASD.

 

I would take time to take in the news of your son having Autism, as it is very normal to feel alsorts of different feelings, many have identified it like a Grieving feeling, so do take time to let go and take it in, you may want to cry, laught, what ever it is, just let it go, and go with the rythum, dont hold back.

 

The whole process from assessment to diagnosis is a real rollercoaster of a ride and you have probable kept it together upto now.

 

So there is a ray of emotions afterwards but it is normal.

A good book is Aspergers Syndrome and your child a parents guide.

 

Micheal D powers and Janet poland.

Page 57 goes throw Shock and denial, Guilt, anger, relief, renewed focus and determination.

 

I would like to see in the future parents be given councilling when a child recieves assessments and diagnosis because it is a very difficult process to deal with.

 

I agree with Nikkih's reply too, the book she has recommended was read to my son and he felt there was a lot of similarities especially the sensory isses.

 

Aspergers Syndrome and High Functioning Autism are both considerd the High functioning of the Autism Spectrum so they have a lot of similarities.

 

Anyway nice to meet you.

 

JsMum

Edited September 23, 2010 by JsMum

[ruthie]

Thanks for all your replies so far i will go through the links.

 

On the education front DS has had a statement for just over 12 months now and it is now overdue review which i suppose is quite a good thing as now that can be tweaked a little bit to account for his diagnosis.

 

He currently attends a special school for children with ESBD,so i think he is in the right place for him at the moment, i do believe they have teachers that have undergone specialist training to help pupils with ASD.

 

He has just started in year 6, so we do now have the decision to make as to whether to try and transfer him back into mainstream to continue his education next september, but his school he is at now has just been extended to be able to take them up to year 9, so he may well stay there for a little longer.

 

I think for now we need to concentrate on making sure he is being educated in the right way to take into account of his diagnosis now. So i think it will take a few weeks for the final report and the diagnosis to get to the school and then i will go in and have a meeting with them to see where we go from here.

 

Thanks again for all your help.

 

Ruth

x

[Karen A]

If you would like some more reading then these links on Annual Reviews might be useful.

 

http://www.ace-ed.org.uk/advice-about-education-for-parents/Special_Educational_Needs/understanding-annual-reviews

 

http://www.autism.org.uk/Living-with-autism/Education/Primary-and-secondary-school/Extra-help-for-your-child-in-school/Extra-help-in-school-England-and-wales/Annual-review-England-Wales.aspx

 

 

It would probably worth pushing to get the Statement updated in view of the new diagnosis.Also transition is a very significant time so also worth getting the Statement as specific and clear as possible.

Karen.

Edited September 23, 2010 by Karen A

[JsMum]

Thanks for all your replies so far i will go through the links.

 

On the education front DS has had a statement for just over 12 months now and it is now overdue review which i suppose is quite a good thing as now that can be tweaked a little bit to account for his diagnosis.

 

He currently attends a special school for children with ESBD,so i think he is in the right place for him at the moment, i do believe they have teachers that have undergone specialist training to help pupils with ASD.

 

He has just started in year 6, so we do now have the decision to make as to whether to try and transfer him back into mainstream to continue his education next september, but his school he is at now has just been extended to be able to take them up to year 9, so he may well stay there for a little longer.

 

I think for now we need to concentrate on making sure he is being educated in the right way to take into account of his diagnosis now. So i think it will take a few weeks for the final report and the diagnosis to get to the school and then i will go in and have a meeting with them to see where we go from here.

 

Thanks again for all your help.

 

Ruth

x

 

Its great news to know he has a statement and in a special school, though his statement will now need to include specific stratagies on his Social functioning, social skills, if he has HFA, that I assume he has had previous speech and language difficulties, does he recieve any speech and language therapy?

 

I would have it comformed the plans for yr 7, as Karen says Transition is a very difficult process for children with special needs.

 

IPSEA are a fantastic organisation, I would contact them to go over your sons present statement and what amendments you feel should be made, do you feel the LEA are placing pressure on him to start a mainstream school, again IPSEA will be able to help you appeal if the LEA do insist on mainstream setting and you dont agree with their decision.

 

Im sure you are aware, but I will note it incase you dont, but any amendments they make you disagree you can appeal and it will go to tribunal.

 

How does your son feel about his special school placement, does he feel he gets enough support and is he progressing.

 

JsMumx

[trekster]

My DS who is 10 has just had the final diagnosis as having HFA. So where do i go now? It's something i know nothing about, i have been given an information pack from Autism West Midlands. So I'm looking for lots of helpful advice on some reading material for me and my partner on HFA, obviously nothing to in depth just something that is a starting point for us to begin to understand.

 

When i was diagnosed age 16 my carers went to the National Autistic Society www.nas.org.uk for help. There is so much on that website you can have a field day on there, from basic information about autism to details of local and national NAS events.

 

It depends on which areas you feel your son is struggling with. When you ask for help mention "classic autism" without the "higher" part as IMHO the "higher" part misleads people into thinking your son doesn't need services.

 

ive just been on the NAS website and put in "child services" and "staffordshire"

http://www.autism.org.uk/directory/search-results/pg=1.aspx

 

The NAS runs a programme for new confused parents like yourself called HELP!

http://www.autism.org.uk/our-services/support-for-families-and-carers/help-programme/help.aspx

 

Have a look to see when the next session is being run in your area.

 

Also what support is out there for us?

 

i have found a parent group in the Stafford area

 

stafford@nas.org.uk in the ST16 area

 

It seems to be a bit of a minefield at the minute and i just don't really know where to start.

 

Also one other question, is there any books out there for children, something i could maybe use to help me explain to DS about his diagnosis as yet he is totally unaware of why we have been going to appointments and what they were for. Should i be telling him now all about them and explaining to him why he is different, or should i just let him carry on the way he is ?

 

I am one very confused mum right now.

 

http://www.autism.org.uk/products/core-non-nas-publications/i-have-autism.aspx is one book (i have autism what is that?) another i recommend is called "what did you say what did you mean". Also the easier questions on "who wants to be a millionaire" tv program to develop his non literal language abilities.

 

http://www.autism.org.uk/shop/books-and-resources-from-the-nas/parenting.aspx is the parents section of the NAS shop.

 

Does your son notice he is different from other children? If not he might not be ready to be told why he is different.

[trekster]

books wise for adults and children look on jessica kingsley's web site they have a specialist section.

you could try just reading him a book slowly talking to him about it as and after you read it see how he reacts. he may well already be aware he his not like most other children and be wondering why and the knowledge could help him.

 

to good books are a "stranger in the playground" and "freaks geeks and aspergers syndrome" as this is from a childs perspective and there are many many similarities. you will learn as you go to a degree as every child with an autistic spectrum disorder is different. many groups are listed on the national autistic society website though it can be hard as i have found to find something for the more able end of the spectrum.

 

an organisation that has helped me no end is autscape.org they have a yearly residential conference by and for people on the spectrum and those who are relatives etc. children do come and they provide child care there and also have online forums you can join.

 

i think Charlotte means "martian in the playground" i agree and excellent book about children's experience of aspergers/autism in school.

[Sally44]

The National Autistic Society also run Help Programmes for the parnets of newly diagnosed children.

It is worth phoning them and finding out when the next one is in your area and getting your name down.