Autism Advisory Service Hertfordshire

My son is 8. Between 2-5yrs he attended a pre school who noticed very small signs of autism which got him referred to the Paediatric team where after several appointments he was diagnosed with low spectrum autism. He thrived through pre school and I took time to consider his primary school options where I chose a small school hoping the less children the more input he would have with teachers there, huge mistake. Both my son and another child were both constantly punished for bad behaviour, excluded nearly every week and the other child’s parents removed their child to another school at which time I had hoped my son would get the support and attention he needed instead he was removed from the main class and placed in what they said was his own learning space a 6x8ft room on his own with a teaching assistant but supposed to still participate in PE, Swimming, trips etc but this to was eventually stopped as well as him eating lunches in the main hall with all the other children. I was then attending monthly meetings which always seemed to mostly consist of me and my son being criticised and blamed for all the problems which arose at school. At no point was I offered information of where I could find support, help or information and my emotional state was constantly being criticised and used for everything the school couldn’t manage including trying to get my son through the gates and into school which had become awful. My son running out of school, crying, trying to catch him etc. During the time this was all going on my brother had been diagnosed with terminal cancer. My brother was 19 at the time and my sons favourite person at that time. Instead of supporting my son there tactics increased, the pressure and harassment were intense and they referred us to social services. This went on for 18 months and in December Ingot a call to exclude my son again and n collecting him he was distraught and in asking him what was wrong he told me it was the day of the Christmas party, they had excluded him to prevent problems at the party and I know this because they had done it previously during school plays, swimming days and inspection days and this was the final straw for me. I removed my son that day knowing it was going to bring more problems to deal with on top of dealing with my younger brothers cancer battle and the need to be there for him but it was a simple choice for me as I was not going to allow the school to treat my 6 year old like this. He at this point was withdrawn, constantly aggressive and lashing out  due to feelings he didn’t know how to deal with. For me this meant constant harassment and pressure from social work. Threats of criminal prosecution and fines but my son was my strength to stick up for him. In my case it paid of, he got into the special needs school I wanted him in and now he is thriving but I myself have struggled and continue to as I’m still the researcher and constantly looking for help myself in adjusting to autism as it changes with every year he gets older and I desperately need support and advice of which neither social work or the school has ever provided. My mental health has been effected, I’ve become down and my worst critic when I can’t manage him on his worst days and still 9 years on I still try to find information and help alone none of which has been helped by the professionals who promise to find it but to date never have but they still criticise me, my skills as a mother and the pressure on me is unbearable. Hertfordshire have let both my son and I down and I know are still putting families and our beautiful kids through hell because of there lack of knowledge themselves. Something needs to be done because families are being punished and treated disgustingly I never want others to go through this. Good luck with all you do and I wish your family well. 

I am a total agreement with you Hertfordshire is a shocking country and 100% cut corners to save the money so they can spend it on decorating school ect. We have no help from the local authorities nor do we get external advice or help with home care for our Son. Ehcp was awarded after a long fight! Only received 10 hours! Ridiculous 

It is good to hear that Allison is happy with support from AAS in Hertfordshire. There are no Autism teams here in Goucestershire and we are now on our 3rd GP! It is a constant battle and very stressful keep having to explain to health and social services our sons autistic needs due to their lack of understanding! And yet the Autism Act 2009 states they are legaly required to have this knowledge! The equality act is also not being adhered to and am putting toghter a portfolio for my local MP with evidence to support this to try and ensure measures are taken to implement these acts!

In contrast we had a very good relationship and direct contact with our GP and neurologist in Berkshre and an epilepsy nurse from the local LD team.. Nothing like this exists here!

I moved here 4 years ago from Berkshire and was an active member of the Berkshire Autistic Society and found it a great source of support... This area lacks this type of invaluable support... And h & s services here are 'not fit for purpose!'

It is a huge struggle but I am currently doing a teacher/trainner qualification and a Masters in Autism which will give me a NAS accreditation to run Autism workshops in this area to raise awareness...

I have found that health & social services here have a very negative impact on my autistic sons and are far from setting a good role model to build confidence in their communication and sensory difficulties!

I have a 17 year old that has had lots of contact with the AAS in Hertfordshire, and our support worker has always been there for me.  She also has been there for other children I know, not even officially referred to her.  The service is underfunded and understaffed as are the schools.  Lots of the specialist support worker in AAS and LINKS are signed off long term sick due to the excessive workload they have been given, and in one year we went through 3 LINKS support workers as they all left due to stress. CAHMs is also underfunded and has lost nearly half its staff.

If your school is not helping, look for a different school, If your doctor is not helping find a different one. it can make all the difference.  Take any offer of help that you can as you dont know where it may lead.

And I am sorry to get political but where does everybody think that the Tories will make there 12 billion pounds worth of savings to the budget in the next 5 years.

JoLiz said:

Hi. Just read your post re your son and can completaly relate to your struggles and agree with what you stated...

I have 3 adult sons 2 have an ASD; and have battled and researched for over 30 years now to approppriate recoginsion and support of thier needs.

Both had SEN from primary entry, however the education system failed to recognise their Autism and in turn this led to both not having the education they needed and were entitiled to or to learn and develop statergies for their social and communicaton difficulties. Which is crutial for all life stages.

My eldest was diagnosed at age 19; following 3 years at a residentiol college where his house mother had an Autistic sister. My youngest at 26, following the start of seizures!

It has been a very traumatic and painful journey due to the lack of understanding by education, health and social services. Having a disastrous impact on family life and often leaving me at breaking point from keep having to explain what Autism is and how it effects my sons in the efforts to enable recogniton and support of their needs. Which they are entitled to. My middle son's needs were not recognied either of the impact of having 2 brothers on the spectrum. Which he was entitled to.

If you read this please let me know on your son's progress? I would also be interested in other parents experiences. And can expand on where we are now.

Hi. Just read your post re your son and can completaly relate to your struggles and agree with what you stated...

I have 3 adult sons 2 have an ASD; and have battled and researched for over 30 years now to approppriate recoginsion and support of thier needs.

Both had SEN from primary entry, however the education system failed to recognise their Autism and in turn this led to both not having the education they needed and were entitiled to or to learn and develop statergies for their social and communicaton difficulties. Which is crutial for all life stages.

My eldest was diagnosed at age 19; following 3 years at a residentiol college where his house mother had an Autistic sister. My youngest at 26, following the start of seizures!

It has been a very traumatic and painful journey due to the lack of understanding by education, health and social services. Having a disastrous impact on family life and often leaving me at breaking point from keep having to explain what Autism is and how it effects my sons in the efforts to enable recogniton and support of their needs. Which they are entitled to. My middle son's needs were not recognied either of the impact of having 2 brothers on the spectrum. Which he was entitled to.

If you read this please let me know on your son's progress? I would also be interested in other parents experiences. And can expand on where we are now.

I want DS’s educational needs met with full time targeted support.

It's not a want. It's a need. Your son has educational needs. There are various acts in place which state that someone with special educational needs (SEN) and /or a disability, has the right to things like an education and has to have their needs met. To not do this is discrimination, unless it can be justified. It being justified is normally a health a safety thing.

Not resolved in the slightest. They are my ongoing thorn in my side.

" incident on 09/10/12, in which DS sustained a head injury due to playing alone with a ball, requiring my immediate attendance and the shortening of DS's school day. This affects DS’s education by taking time off.

As you will be aware, I am compiling evidence for Statutory Assessment. I intend to submit this email and report as part of my evidence bundle.

In the last 12 months, DS has had 3 entries in the accident book, and I have had to collect him from school once. At all times DS has been playing, and suffered injuries. He is an above average vulnerable child with all his problems as noted in the reports you will also have received from EP, OT, SALT and Autism Advisory service all dated within the last 12 months. Outside agencies have only visited DS on a few occasions, and have observed him during activities that he excels at. This affects DS’s education by failing to help him access the curriculum. This is shown by the CAF/TAF process. We were disappointed that the last TAF meeting highlighted the fact that DS has not been adequately assessed for his support needs.

At our last TAF meeting (dated 16/10/12) the following professionals had no evidence (even anecdotal) of DS : 
1. the Autism Advisory service had not seen our son since the last one. Last report dated -22/05/12
2. They had changed the SALT again and she was getting to know my son again! Last report dated -10/05/12
3. The teacher had very little to say. The LSA reported observations. Last report dated – July-12
4.The School Family Worker the Lead Professional did not attend the meeting.

5. OT discharged George but reminded us we could always contact them again when needed. This affects George’s education by him avoiding certain situations.

6. EP was asked to attend but declined, her reasons given in her letter -submitted. He does not have any documented learning difficulties although I suspect dyslexia, this affects DS’s education.

I wouldn't mind helping him catch up with a tutor if the system was working properly. However, I feel his educational needs should be met first. This affects DS’s education by him under performing according to his IQ.   It was my understanding that we would have been given evidence how DS’s transition was made from Y1 to Y2 from these professionals. Very little of the meeting was taken up on this subject. This affects DS’s education by him not being understood by whether he can access the curriculum.

Since the involvement of EP, OT, SALT and Autism Advisory services, three years ago, DS has not been assessed using standardised tests. We feel that without standardised testing, DS‘s abilities and limitations will not be fully explored, and progress cannot adequately be monitored. This affects DS’s education by him not being able to work, at the level, he can.

Therefore he would not be able to access the curriculum without additional support. I feel there really is nothing I can do, except request Statutory Assessment as it would be a Health and Safety issue because he would get hurt, as he has no sense of danger. This affects DS’s education by him taking time off from the curriculum.

However, I do feel he fits the criteria (quoting SEN CoP) as there is no evidence that sufficient progress at School Action Plus from the above specialists has helped especially in the areas of:

A) They haven't made any effort, and even if they did, it wouldn't work.  DS’s difficulties in social communication (three years delay) and social interaction (four years delay) still persist and the delays are becoming wider despite their efforts. This is the most significant indication that DS’s needs are not being met. This affects DS’s education by him not being able to learn off others as well as he could.

“B) That the pupil appears to have significant special educational needs.

 These may be:

• significant learning difficulties

• significant impairments, and/or

• significant emotional and/or behavioural difficulties”

DS has significant impairments as well as emotional difficulties and they still persist as discussed in the meetings, despite their efforts. This affects DS’s education by him not being able to learn off others as well as he could.

In the incident on 09/10/12, the accident report states that DS hit his head. However, he had a substantial graze on his back that took several days to heal. DS’s general inability to play safely has been missed by the OT and Autism Advisory professionals working with him. The EP and Autism Advisory know he has sensory needs as highlighted by the OT and can often be misunderstood by the staff. He needs extra support outside of the 20 hours LSA time, (happened outside of provided time) awarded by the school which can only be enabled, by Statutory Assessment. Despite current interventions barriers remain to DS’s education.

I want DS’s educational needs met with full time targeted support.

As you know I have not been happy with the whole situation due to my endless letters, phone calls and chats but I feel we were only looking at his academic progress which is also delayed.

 Unfortunately, I think the time has come to accept that without LA support, DS's needs will not be met."

I need you to crit what I have written, essentially shoot me down because I want to make sure we are watertight. Thank-you.

You have my deepest empathy.

I too am mired in frustration with the Herts "Specialist" service, and have been for the last 5 years.

Did you manage to resolve this at all?