Autism & Your Child
Tips & Advice For Parents & Carers
I have two young boys with autism and this advice is based purely upon on my own experiences. Feel free to disagree with me or disregard the advice; I just hope that some of it makes practical sense.
DIAGNOSIS
It is very important to get the most accurate diagnosis of your child’s condition at the earliest possible opportunity. You may find it hard to accept that your child has a special need but you have to accept it for their sake and move on. Besides, until you have a definite diagnosis it is very difficult to plan for the future, and this will affect your child’s future development. Almost certainly your child’s disability will impact upon your career and financial position which is why you need to get to grips with things at the earliest opportunity. Drifting on aimlessly whilst in denial is a negative and damaging option. Besides, if you can’t cope then you need to admit it and hand your child over to someone who can.
If you have a belligerent, insensitive or incompetent GP, switch doctors or pay to access a paediatrician privately. An early diagnosis is essential. Remember, your GP is not a specialist, he or she is simply a policeman diverting traffic into a bewildering series of roads. Follow your instinct and make sure you get your child seen by the specialist you think should see them. Almost certainly you will want them to see a hospital consultant who will in the case of mental impairment probably refer them for hearing tests to rule out any physical problems which may be causing developmental delay.
STATEMENT OF SPECIAL EDUCATIONAL NEED
This is the single most important document you need to obtain. Without it your access to increased funding support or tailored education is extremely difficult. Hopefully your consultant will swiftly identify your child’s disability and request that a statement be prepared. Your local educational department is then required by law to solicit input from various third parties within a set timescale, and then to publish a statement outlining what your child’s need is, and how it can be best met.
If they fail to meet deadlines or consult the appropriate parties don’t panic - it could provide leverage later on should you ever need to argue that your local authority cannot meet your child’s need (for example, you might want to argue that they should fund your child’s placement at a private school).
Be wary about timetable slippages - some local authorities will seek to excuse delays in the statementing process by blaming your own inability to attend appointments. Try to be as flexible as possible and put the onus back on them to meet the deadlines, even it it means taking time off work or cutting short a holiday.
Once obtained, a statement of special educational need has to reviewed annually by the local authority. Again, make sure you keep on top of things. Most importantly, if you think any one of the third parties is failing your child, make sure you document that when it’s your turn to comment. For example, you may be dissatisfied with the speech therapy your child is receiving, or facilities at the child’s school. Unless these are formally documented, the paper-loving bureaucrats won’t be able to resolve them.
DISABILITY LIVING ALLOWANCE
The Disability Living Allowance is a right, not a charity payment you should feel guilty about claiming. If your child has a disability then they are under law entitled to extra financial support to help them lead more fulfilling lives. So claim it.
According to recent Government figures carers provide nearly £90 billion worth of care to society every year - which is more than the NHS’s entire spend on the country’s health service. Despite this, the role of the carer is taken for granted and even disparaged in some quarters. If as a civilised society we can’t improve the quality of life for the disadvantaged few, then we haven’t advanced much in evolutionary terms. Besides, some of the disabilities our children suffer may be linked to society’s inept management of the environment or the health service, so the least society can do is attempt to restore some degree of equality to those who may have been affected by crop-spraying, MMR, medical negligence, food additives, drug side-effects, criminal injury etc etc. If convicted felons are entitled to colour televisions in their prison cells, your child is entitled to extra support if he or she requires greater care than a ‘normal’ child.
Your child will almost certainly be entitled entitled to Disability Living Allowance (provided you manage to get a reasonably accurate diagnosis of course). DLA is composed to two elements: Carer’s Component and the Mobility Component. You will need to obtain claim forms and send them back to the Department of Work & Pensions.
The Carer’s Component is awarded to those who care for children with special needs. There are three levels - high, middle and lower rate. The latter two are non-taxable, the higher rate has to be declared. Unless your child is over or very close to being 5 he or she will probably not qualify for the Mobility Component of DLA unless they have a physical disability. Children under 5 with autism, for example, are not deemed to be any harder to manage than a typical 5 year old child because their physical motor skills are judged to be similar. However, after the age of 5 all children with a special need can be considered for either Low or High Rate Mobility.
Some parents think that children with autism do not have mobility problems but this is absolutely not the case. The Mobility Component of DLA was initiated in response to lobbying from wheelchair users, perhaps the most vocal of all special needs groups. Initially it favoured wheelchair users even though those with learning difficulties can and often do present with far more serious care requirements. However, it has now been accepted that not only are some autistic children incapable of controlling their limbs, but that the erratic and unpredictable nature of their thought processes can lead to risk of serious injury to both themselves and others. Autistic children do not always understand the dangers associated with traffic, water, electricity, height etc, and thus may require constant supervision. My own children are attracted to moving vehicles for instance, and would run into the middle of a busy road if given half a chance. Autistic children sleep less than ‘normal’ children and are often hyper-active; again, this can cause increased mobility concerns. The inability to process risk and to thus coordinate an appropriate physical response is a source of constant concern for the carer, and requires detailed risk assessment in order to prevent or limit injury.
The form seeks to evaluate the degree of your child’s need in terms of what their disability is, how profound is it and what impact does it have upon your lives.
Tips for filling the form in:
1. The form is extremely long - set aside plenty of time to complete them.
2. Before filling it in, seek advice from the voluntary organisation (VO) which best caters for your child’s special need. Ask them how to most accurately detail your child’s special need. Don’t exaggerate the child’s condition but do be honest about the situation and try to err on the worst case scenario. Some parents are in denial about their child’s condition and seek to underestimate the seriousness of the need - this is a bad mistake. Check out the VO’s website, they may have advice for form-filling. The National Autistic Society certainly does, and jolly useful they are too. Failing that, go to your local Citizen’s Advice Bureau; they will be able to put you in touch with someone.
3. Glance through all of the questions, then fill in the form in pencil. Treat it as you would an exam paper that you have the leisure to complete at home, in your own time. Try to follow the advice of others especially when it comes to using key words and phrases, many of which have medical connotations. After all, your claim will be evaluated by skilled professionals who are familiar with such jargon.
4. Think about your answers overnight and then fill in the form in pen the next day, revising where applicable. Remember to erase the pencil markings afterwards.
5. Be consistent. Some of the questions are cross-referenced. A cynic would argue that they are trying to catch you out; an optimist that they are tying to clarify the situation for everybody’s benefit. Personally I don’t know what the reasons are for this and little do I care: just try to fill the form in as accurately and consistently as possibly, and let others worry about any slight discrepancies or inconsistencies.
5. Photocopy the form before you send it in. Although it is unlikely to get lost, you will almost certainly want to refer to it at a later date, for example when completing the review at a later date, or if appealing the decision of the DWP.
The evaluation process will take as long as it takes, but rest assured that if your child is awarded any DLA, it will be backdated. Appeals take even longer than the initial evaluation which is why it is worth filling in the first form as carefully as possible.
If you are claiming Tax Credits or Council Tax rebates notify them as soon as you hear back from the DWP. Almost certainly you will qualify for more allowances should the DWP agree that your child is entitled to DLA.
If you are awarded the Higher Rate Mobility Component you can ‘swap’ the payment for a lease car under the Motability Scheme. This scheme ensures that the carers of disabled children have access to reliable transport. In particular, it helps those who require specially-adapted vehicles. Motability will purchase a car of your choice which they will then lease back to you in exchange for your Higher Rate allowance. They will provide insurance, breakdown cover and pay for all servicing. Your only expense will be for petrol. However, the scheme only provides for basic cars, so if you wish to upgrade to a better model, you will have to pay an advance sum out of your own pocket. This is non-recoverable. At the end of the lease period (usually three years), the car will be sold off at auction by Motability and you will receive a new one. Alternatively you can purchase a car via hire purchase, with Motability acting as the lender. Obviously interest is charged, but the advantage for the carer is that the loan does not require credit checks, and is funded by the Higher Rate Component. As many carers fall into the poverty trap because of the need to sacrifice their career to care for their child, this scheme ensures that even the most debt-ridden carer has access to reliable transport.
SCHOOLING
There is a ‘lottery postcode’ when it comes to schooling. The current Government has closed 120 special needs schools in the last ten years while encouraging parents to send their children to mainstream schools. You will therefore almost certainly have to send your child to a local school. The statement you obtain will help identify the school which will best suit your child’s need. However, be prepared for the fact that almost every school will have less qualified staff than special schools. In many cases your child will be allocated an unqualified one-to-one carer who will hopefully be supported and guided by the various professionals in the education and health service, for example, child psychologists and speech therapists. The chance of your child receiving one-to-one support from a highly qualified special needs professional is practically zero because they will almost certainly be paid close to the minimum wage. In theory the various specialists will then visit the school’s SENCO (Special Edicational Needs Coordination Officer) on a regular basis to both assess and support your child by advising the SENCO and one-to-one carer.
Some local authorities acknowledge that they cannot meet the needs of all children with special needs while some believe that they can. Oddly, the wealthier authorities fall into the former category and the poorer the latter. Funny that, because it should be a matter of need and policy. Anyway, in theory the statementing process enables your child to attend the school which best meets his or her need; thus if mainstream schools fail to meet that need but a private special school would, you can - in theory - send your child to the private special school and expect the local authority to pick up the tab.
However, in practise, if you live in an area where your local authority has decided that all special needs must be met through existing local provision - e.g. they are too mean to fund other alternatives - then you must battle them in the courts to secure funding. As the local authority would not want to establish a precedent, they will almost certainly spend vast sums on fighting the case ‘tooth-and-claw’. Perish the thought that Councillors should have their allowances cut to fund special needs places for disadvantaged children!
Obviously one must have a smidgen of sympathy for the local authorities (but only a very small smidgen; let’s not get carried away here). After all, it’s not their fault that central Government closed 120 special needs schools. However, as a parent you must be dispassionate and view the issue from a factual needs-driven basis: if your local authority is incapable of providing the care that your child is entitled to, then they should fund a reasonable alternative. Unfortunately the fees for private special needs schools have been driven up the loss of so many state-funded facilities, bit again, that is not your fault, it is the Government’s. Your obligation is a simple one: to secure the best possible education for your child and to make sure that the local authority provides it. After all, if MPs are allowed to claim six figure expenses a year in addition to their salaries - money which many of them use to send their own children to private schools - then you have the right to demand funding for your child’s basic education.
Tips for choosing the best school:
1. Consider all the issues, not just your child’s educational requirements. How far away is the school? Is it the right size for them? Will they settle and be happy? How secure is the school and how pro-active is the school’s approach to health and safety? How robustly do they stamp out bullying? Are the staff positive and well-motivated? What experience do they have of dealing with special needs?
2. Although your local health authority’s children services department isn’t allowed to recommend specific schools or nurseries, you can usually solicit off-the-record advice about which facilities are highly regarded by the professionals. Tackle them discretely on the subject and obtain what information you can.
3. Try to pick a school which physically resembles any nursery your child attended.
4. Speak to the SENCO and try to find out who will be recruited to provide one-to-one care for your child and what qualifications they possess. Most SENCO’s are well-motivated and well-trained though they might not have specific knowledge of your own child’s special need.
5. Make sure that your child is being supervised on a one-to-one basis during breaktimes. This will prevent bullying and reduce the chance of accident or unhappiness.
6. Don’t worry about the educational or developmental issues during the first term. The most important thing is that your child settles in quickly and starts to enjoy school life.
7. Liaise closely with the SENCO to find out when any specialists will be visiting the school to support your child. Record the details in a diary and try to ensure that your child is not absent on these important days.
8. Almost certainly your child will be come home each day with a diary detailing what has happened that day. Try to check this daily or at the very least weekly, and record your own feedback or concerns in the book so that the SENCO and one-to-one carers can respond.
9. If your child is desperately unhappy at the school you must speak to the SENCO or head to find out why. Remember that autistic children can become unhappy and frustrated at home so don’t immediately blame the school. If you cannot resolve the problem, or if you think your child is at risk (for example, from bullying or poor supervision), then speak to the local authority education department. In extreme cases you should remove your child from the school, but it is important to prove that you have exhausted all reasonable options beforehand. Put things in writing if informal discussion fails to resolve the problem, and keep a diary record of any significant events.
10. If after the first term you don’t think that the needs of your child are being best served then you should raise concerns with the appropriate parties (ideally the SENCO should be aware of all such concerns). If these are not resolved in a reasonable time period - say over the course of the next term - then you should start thinking about alternative schools. Discuss this with the education department and the health authority’s childrens’ services team. The paediatric consultant and educational psychologists should be your greatest allies since their expert reports form the basis of your child’s diagnosis and special needs statement. Furthermore they are guided by considerably purer and more humanitarian motives than the local government politicians who agree the schools’ budgets.
NB. Some mainstream schools may be quick to exclude children who display anti-social behaviour so do monitor this issue carefully. Although your child may have a right to join the school you select for him or her, the school may decide that the child is too much bother, and can use alleged anti-social behaviour as grounds for excluding them. Undoubtedly some unscrupulous headmasters may use this tactic to rid themselves of disruptive pupils - although it is to be hoped this would be an uncommon practise - however, parents and carers are advised to keep a sharp eye out for allegations of this nature. In particular, if the alleged anti-social behaviour is being caused in any way by the school’s unsatisfactory management of your child’s special need, then you should document this where feasible Otherwise, what is there to stop a secretly selective school from manipulating the exclusion process to weed out any unwelcome pupils?
RESPITE CARE
Respite care is a joke. Social services departments must spend ten times more on administering respite care than they do on frontline service delivery. First they have to assess your need - this takes several man-hours and usually involves expensive off-site home visits (presumably to justify the company cars). Then they need to have a series of internal meetings to agree whether or not your need is just, and to find out whether there is any money left in that year’s budget to meet your need.
In my experience, if your child has two parents and you live in anything resembling a faintly middle class home, you will be deemed a very low priority and will either qualify for very little or nothing at all. If you are a single parent you have a far higher chance of success, especially if you live in a modest house. In many ways this is fair, and reflects the fact that children with special needs from low income single parent families are far more likely to slip into the poverty trap and thus possible adoption / fostering. However, it does mean that access to respite care is not always awarded on the basis of actual emotional or physical need. Furthermore, unlike other allowances, respite care is decided upon in secret by local authority social services, so you really have little idea about whether you might qualify.
If they agree that you do qualify for respite care, don’t fall into the trap of believing that they will suddenly send Mary Poppins along to your house. No, you will have to interview the various applicants, and then spend several hours completing paperwork and filling in time sheets. Social services will agree a job specification with you and place the adverts in the local media, but you will have to interview the applicants yourself at home. Of course the advantage of this is that you get to choose who you want to employ, so it is not without its benefits.
If your respite care is only for a few hours a week you may spend months advertising for applicants. After all, the pay is minimum wage. We spent several months trying to find two people who would work for just three hours on a Saturday. It got to the stage where I wanted to throw the towel in and tell social services where to (for reasons of decency the remainder of this sentence has been censored). However, perhaps my chagrin was successfully communicated to the social service department, because they suddenly produced two excellent applicants who were both highly skilled and willing to work weekends. If your need is greater then hopefully you will secure more respite care than we have. For example, single parents with more than one child will almost certainly need help in the mornings and evenings as well as occasional holiday breaks.
Comment
As a parent of children with autism I was personally appalled by the former education secretary Ruth Kelly’s recent decision to take her child out of state school and place him in a private facility. Not only was Kelly the former Education Secretary but she is also a member of the supposedly left-wing Labour party. Since Labour has come to power, her party has overseen the closure of 120 Special Needs schools,arguing that those needs can be better met in mainstream schools - the same mainstream schools that she has now decided aren’t capable of meeting the needs of her own child.
The message seems to be clear: the state system is good enough for the average voter, but it isn’t good enough for the politicians themselves. Even were one to argue that Kelly is entitled to exercise her parental rights by choosing whether to educate her child privately, the fact remains that the vast majority of parents can’t afford to send their children to private schools because they don’t hold highly salaried positions in the Government. And contrary to the ridiculous claims made by Tony Blair’s chum Lord Falconer on Question Time recently - a man who privately educated his own four children - local authorities rarely fund places in private special needs schools because they can’t afford to. For example, Norfolk County Council steadfastly refuses to fund any private special need, despite having failed on numerous occasions to meet those needs within its own system (as per the various appeals claims currently going through). In contrast, some of the extremely wealthy London boroughs such as Westminster and Kensington & Chelsea quite happily stump up whatever is required,provided that the need can be met. This scandalous ‘postcode lottery’ is yet another indictment of the existing system.
Ruth Kelly’s child suffers from dyslexia - a minor special needs by any standard. If the half dozen local state schools in her neighbourhood - all of which have been judged to be of a high standard by her own former department - cannot meet such a minor need, then surely this suggests that the system is horribly flawed. More worryingly, this matter exposes another sinister aspect of the Government’s existing education policy - its reliance upon League Tables. Under the current system, mainstream schools are judged ruthlessly by their exam results. Indeed, their access to increased future funding is linked to performance. This has created a results-based focus which excludes children with special needs, since many schools are concerned that such children will drag down their results average. Furthermore, as the rich flock to buy up property in the catchment zones of the best performing schools, those families with special needs children - traditionally living on the breadline as per numerous statistical studies - are forced out into more affordable areas. And a final consideration is that the great majority of schools grumble about large class sizes in small classrooms - little wonder that the prospect of squeezing in a potentially disruptive child with special needs plus an extra adult carer is deeply unattractive to many headteachers.
The current policies are therefore unfair and by default discriminatory. On the one hand Tony Blair’s Government has massively culled special needs schools, whilst on the other, he has failed to provide counter-balancing facilities within the existing educational system. To make matters worse, he has encouraged the best schools to exclude children with special needs lest they fail to reach academic targets and loose funding. One would be hard-pressed to conjure up a series of policies more discriminatory towards children with special needs.
Suggested improvements:
1. Generous funding incentives for schools taking children with special needs.
2. Independent inspections to ensure that schools are not barring access to special needs children, and penalties for those that are i.e. fines, league table points deductions.
3. National policy on funding places in private schools where the need cannot be met by the state. Local authorities who fail to adhere to the policy should be named-and-shamed and heavily fined.
4. Creation of a network of Government funded training establishments across the country where individuals can be trained to met specific special needs, for example speech therapists, educational psychologists etc.
5. Judging children with special needs on a completely different system to the existing league tables (the emphasis should be on the overall quality of education linked to passing key personal milestones).