refused referral for autism

I can understand where you are coming from hun. 

Hi Louabelle, keep persisting. It sucks but trust your instincts not a GP who probably has no experience of ASD. 

SD16 got confirmation of ASD on 1 June. Her Dad my SO has been expressing concern for 10 years, but was being told she would get better with more time. Once he was separated from his ex, it was "mother says there is no problems, so what would father know?"

When SD was 14 she started questioning why she was different and came up off her own research with ADHD inattentive subtype (without knowing her Dad has it and her sister would get diagnosed age 20). Mother has blocked efforts and eventually family court ruled SD being 16 could consent. Still took us 6 months to find a psychologist who would agree to assess.

We are currently now wondering what mother will do to prevent SD16 accessing proper support (other than her usual not reinforcing age appropriate social behaviour).

I'm a health professional and I know how to use the system. It's been/still will be a total nightmare to get things moving, hence my finding a forum to rant on (even if it is 1/2 a world away.

IMHO, SD16 is probably both ADHD/ASD and may also have antisocial personality disorder...but I will keep fighting for access as long as she wants me to, because if I don't I'm certain my old age will be haunted by having to deal with an adult who can't cope with the outside world.

I don't mean my comments to be taken negatively. I have a diagnosis and I am aware that other people get irritated by the way I come across. That isn't an excuse, more of an explanation. hohum.

The forum is mainly used by people with autism so I think that it is good to give us all a bit of leeway before trying to work out what we really mean when we write something in a post!

When you are trying to get a diagnosis for someone I think it is important to be aware of the pitfalls and of what the people on the other side of the desk might be thinking. Unfortunately, there are people who think that their children have autism when they don't. I don't think that you sound like that at all and I think that you really should pursue a diagnosis because I do think that it can help. There are also parents who are making their children worse (with or without autism) because they don't know how to be good parents. I don't think you sound like that at all but the doctors etc have to contend with trying to sort the wheat from the chaff so it becomes another hurdle for a parent who is tryuing to do the best for their child.

hi paula i can sympathise with you and i do understand exactly how you feel, there seems to be alot of negative comments on here about just because your child does this or doesnt do that that doesnt make them autistic.

Is it down to parenting?

are you communicating with your child in the right way?

is your child despressed?

we are not looking to label our children we just want to help them. like your son my daughter will go to school because she know she has to but that doesnt mean she doesnt find it hard. infact she is like a pressure cooker about to go off. the minute she is home its like a release for her to vent all her frustrations out, usaullly she doesnt even know why. you seem to be doing the right thing so keep doing what you are doing and dont give up

Hi, no you are right there is no magic bullet to solve anything!! Regardless of whether we get a diagnosis or not. My daughter was statemented in yr 5 of primary school and this has remained into mainstream secondary so the school get funding for her. She goes to thrive and also goes to a school counsellor every week but like alot of children she will only tell the counsellor what she thinks she wants to hear.

Unfortunately her disabilities are academic and socially and although the school have picked it up  and the school have spoken to my gp the hospital will still not see her.

We are both very much aware of my daughter's problems and had to accept them along time ago but has any decent parent would be , i want to be able to help my daughter! 

Im not out to label her in any shape or form but i need help to be able to help her when everything's getting to much for her to cope with. 

I suspect that financial concerns do have a bearing on some of these decisions but probably not as often as people might think.

There is a valid concern about mis-diagnosis. The TV series "Born Naughty?" showed that some cases of suspected autism were actually just unskilled parents who needed some additional skills. That program showed how difficult it is for the lay person to tell the difference between naughty and autistic.

There is also a valid concern about the pathologising of normal life. It seems that it is common in certain areas for people to go into therapy when actually there is nothing wrong with them. Life isn't always a bed of roses but that doesn't mean that you need to go to the doctor to fix it.

The most common reason for resistance, in my opinion, comes from ignorance and lack of empathy from doctors and professionals. This isn't deliberate or malicious, it is just a fact of life that things aren't ever as straightforward as they could be.

Another issue that people with autism suffer from is that it is difficult to persuade a doctor of something if you don't have the best advocacy skills yourself. Most people are not particularly skillful at persuasion and this gets even harder when the person, such as someone with autistic traits, has particularly poor persuasion skills.

There may be another reason for being refused a referral.

And it is financial.  Over the past few years increasing number of children have been referred and found to be autistic.  And now the pendulum is swinging the other way.  schools may be under pressure to cut down the number of referrals.

Paula A said:

they will not asses because he is so different at home and at school, they said it is not in keeping with a child on the autistic spectrum.

This shows very little understanding of autism. This forum has many stories of a child behaving well at home or at school and being completely different in the other situation.

The problems that an autistic person has are directly related to what goes on in that person's environment. Some schools are toxic to autistic children and some homes don't know how to manage an autistic child or the child bottles stuff up at school and explodes at home.

This discussion reminds me to highlight the importance of getting a diagnosis by being clear that

a) the person has autistic traits, these should be described to the doctor

b) the person has a real problem that has followed from having the traits. The impact that the autistic person is suffering needs to be clearly explained to the doctor.

These are two very separate headings. They need to separated in one's mind when going for a diagnosis. It is not enough to list the traits without highlighting the problems that the person has.

The benefit of a diagnosis are clear in the OP's case, the child is being made miserable by not knowing how to integrate and succeed at school. The cognitive issues may actually be a lack of understanding of how her autism is affecting her ability to communicate.

In Paula's case, it is not clear from this post what problems are in need of treatment but that is probably the subject for another thread.

I have been fighting for my 6 year old to be assessed since he was 2 and kept being refused except for the last time.

The community pediatrics said they would only look at assessing once myself and the teacher had filled out the questionnaire forms and returned them.

 I knew I would have problems because at school he does not show any traits that could be put down to autism. He is academicly well above average,  So when our forms were sent off and studied the reply came back that they will not asses because he is so different at home and at school, they said it is not in keeping with a child on the autistic spectrum. All of my answers were in the high and very high range, which is typical of a child with autism, but the schools one said every answer was within a normal child's range. So they will not except that a child with autism can control there behavior during school. 

A

I cannot pretend to be affected by autism in the same way as your daughter.  However, I am aware that a diagnosis opens up many doors that would otherwise be shut.

My feeling is that however much one thinks that autism shares traits with other conditions, if autism is the cause of one's difficulties, other conditions which may be present are merely masking the root cause of the problem.  I hesitate to say that autism is a 'problem', but if autism is the root cause, understanding that is the case is of immense importance.  Yes, autism cannot be cured (in my case, many years ago the 'treatment' was severe physical punishment.)  I was considered 'naughty' and was subject also to bullying.  This has had an effect on me throughout my life of chronic anxiety and depression.  I may have come through the education system at least to the end of secondary education with some qualifications that were considered very good at the time, but I did not have much success in job searching, being in my late forties until I actually managed to get 'permanent' employment.

I know, in retrospect, what a diagnosis means, and the earlier a diagnosis can be obtained the more help that can be obtained.  Do not give up on this.  You want the best for your child and you are receiving second class (at best) service.  It should not be some sort of lottery as to whether your daughter gets assessed and diagnosed.  And even if your daughter turns out not to be autistic, at least you will then be aware that there are other reasons for her being the way she is.

I am unclear as to whether the refusal to give your daughter a diagnostic assessment is because of some sort of problem your health authority has.  This is one problem your MP may be able to help you with when the election is over.  Usually MPs are very interested in the problems their constituents have with authority, whatever their political affinity.  And it is often amazing the results that can be forthcoming.

There is an expression 'The squeaky wheel gets the grease'.  Being autistic, I might interpret this differently, but the more you keep putting your view over, the more you are likely to get results.

Good luck!

Blossom said:

A diagnosis is vitally important to children and parents. Without it, they cannot access the support network they need, although admittedly that is becoming harder and harder. Our child needed a diagnosis to be on the Child with Disabilities team and for him to access respite care and to get a really fantastic social worker. Without the diagnosis, he would not have his place at CAMHS where he is monitored and supported by a great psychiatrist. There is no specialist help at school, in most cases, without that diagnosis. Plus for the child as they grow into adulthood and the problems of independence become acute, they need to know why they people to react to them so differently and why they feel so different. Accessing work is pretty hard anyway but for somebody who has no diagnosis and just seen as 'odd' in many cases leads to depression and even suicide. Disability Allowances are vital to help socialize a child and in the situation where they are distructive to keep a safe roof over their heads. Many parents have to give up work as school refusal and 13 weeks of school holidays to manage are impossible..without the diagnosis they are not entitled to the Carer's Allowance that at least recognizes, in a small way, that important role that parents play in helping their child and saving the state vast amounts of money. Autism is not an educational issue alone.

Fascinating.  I learn something new everyday on this website.  When I was young nobody had heard of autism and there was non of this kind of help available. We just fell through the cracks.  My father who had MH issues himself was openly verbal that no one must find out about me and I was often treated by the family as if I didn't exist.

A diagnosis is vitally important to children and parents. Without it, they cannot access the support network they need, although admittedly that is becoming harder and harder. Our child needed a diagnosis to be on the Child with Disabilities team and for him to access respite care and to get a really fantastic social worker. Without the diagnosis, he would not have his place at CAMHS where he is monitored and supported by a great psychiatrist. There is no specialist help at school, in most cases, without that diagnosis. Plus for the child as they grow into adulthood and the problems of independence become acute, they need to know why they people to react to them so differently and why they feel so different. Accessing work is pretty hard anyway but for somebody who has no diagnosis and just seen as 'odd' in many cases leads to depression and even suicide. Disability Allowances are vital to help socialize a child and in the situation where they are distructive to keep a safe roof over their heads. Many parents have to give up work as school refusal and 13 weeks of school holidays to manage are impossible..without the diagnosis they are not entitled to the Carer's Allowance that at least recognizes, in a small way, that important role that parents play in helping their child and saving the state vast amounts of money. Autism is not an educational issue alone.

I'm still a bit confused why you are so concerned about get an autism diagnosis.  It is not a magic bullet that will solve all your daughter's problems.

You mention that she has cognitive learning disabilities and meetings with a senco teacher.  If the school is aware of her problems they should be giving her specialist help. (Autism or not!)

Also, are her disabilities social, academic or both?

Does she behave differently at school than at home?  

How well do you communicate with her?  

You both seem to be aware of her problems.  And accepting that there is a problem, is half way to solving it.

This forum is full of stories of how autism was not recognised when it could have been. Autism is an almost invisible condition (it is visible to people who really know what they are looking for) that gets confused with all sorts of things and I am not surprised that nobody might have seen it. There is no point blaming yourself, or anyone else, for what has happend - it is very rare indeed to come across people who are doing things for the really wrong reasons.

Have you called the NAS helpline? They may be able to give you some things to explore.

Have you considered a different mainstream school? - some schools are basically toxic for autistic children and her current school may just be a bad environment for her.

Have you considered a special school? Sometimes a child may thrive in a special school where they struggled in mainstream.

Im starting to question everything i have fought for all these years!! I was always fobbed off with primary school that it was just cognitive learning problems and was told to accept it but as a parent you just know. Ive never felt so down about all of this because i feel i am letting my daughter down. I had to explain to her today that the hospital have cancelled her appointment again and tried to explain their reasons why they wont see her. Her words broke me... mum why cant they help me? 

The GP is responsible for her health and wellbeing (both physical and mental aspects). They have budgets for investigations and treatment and if one specialist refuses then the GP can find a different specialist (possibly out of area) who will examine your daughter. You may need to be patient but insistent in demanding that something gets done.

Her inability to explain herself could be consistent with her being autistic. Other explanations are also possible so be careful about looking for the signs and then just confirming your own suspicions. It needs an expert eye to unravel what is going on. A lot of people with autism also express this feeling of being different but again there are all sorts of feelings and ideas that can make one feel like that.

After the last refusal my gp said she was a little girl lost in the system but with no one prepared to even see us at the 1st hurdle. The latest refusal which came in yesterday from the hospital said she had significant learning disabilities and thats why she is like she is!! Wow i didn't realise they could diagnose anyone without seeing her first

Hi all, thank you responding. Unfortunately my daughter has never really felt comfortable in school but she has never explained why. She only says its too much for her. She once asked me why is she different from the other kids to my reply was your no different. Some children find school easier than others. Over the years she has had loads of children wanting to be her friend but concept of having more than one friend and them falling out is just too much for her to cope with.

My daughter's a very kind and respectful young lady and has never been bullied so i can honesty say i dont know why she feels this way about school.

You are entitled to get a second opinion from a different set of specialists. See this link for various duiscussions that have been had on the forum on this subject community.autism.org.uk/.../"second opinion"

What does the GP think of their refusal? Are they effectively saying that there is a primary diagnosis of learning difficulties? Did they give a more specific diagnosis than that?

As for their points scores.  I feel despair.

Autism is a spectrum where I child can display some aspects of autism and appear normal in other situations.